What would YOU do?

“Our lives begin to end the day we become silent about things that matter.” ~ Martin Luther King Jr.

I know many of you have been following my blog and have felt the heartache and struggles we’re faced with since learning the baby has spina bifida. I admit, every single day my heart feels torn in so many directions and I am still wishing for some sort of sign to help us make this decision. Thus far all the doctors and counselors have been amazing and reassuring and have not steered us in any specific direction, which I have heard many Spina Bifida parents have felt mislead. I honestly wished I had some sort of certainty that whatever decision we made we’d make it with confidence and not be left with the guilt or heartache we anticipate will follow no matter what we decide. So now I turn to all of you…many who know me personally. Some have somehow come to follow me through my photography, career as an educator, or perhaps you’ve just stumbled upon my blog and have been compelled enough to still be following my crazy life. Some have connected with me in these last three weeks since learning this news and either have children with spina bifida or have lost babies due to spina bifida. So now I turn to you and ask your opinions. I have been so amazingly touched by everyone’s support and reassurance, though I have mostly only received warm wishes and prayers, rarely ever any true opinions. I know some are afraid to say anything that may hurt me. Honestly, I’m not so sure I can be hurt much more than I already am. So I turn to you and ask, if you were placed in this position what would YOU do?

Now before I really ask for these opinions I first want to make it absolutely clear that I do NOT want you all to think this is a place to vent any type of hate messages to me for these decisions we are faced with. I know many who are prolife who feel strong feelings about their thoughts. I also know many who are also on the other side of the fence who feel the complete opposite. Though I ask for your opinions, honestly, I cannot tolerate any hate messages. Because of this I have made an anonymous survey available for you to share your own “decision” without the fear that I’ll worry what you think personally. I feel as though I’m in a no win situation here with such a controversial decision that honestly will cause a lot of heartache and challenging moments for my family no matter what we decide. But I am interested in your opinions. For now I will leave comments open, but I forewarn you that if any offensive messages are posted I will quickly delete them and close comments and just leave the poll open.

Also, because I know some may not be familiar with the details of our decisions – I’ll list them briefly before you give me your two cents in this survey. Though I certainly care to hear what you all say, I will tell you that this will not be the definitive reason for any decision we make – it just really compells me to wonder what everyone else would do if they were placed in my shoes. This decision is not one that we are taken lightly…I won’t even begin to tell you the heartache and struggles we’re coping with that have lead so so many tearful moments just wishing we didn’t have to endure any of these decisions.

OUR THREE CHOICES (listed in no specific order)

  • Participate in the MOMS research study. The study is random where they are trying to learn if in utero (during pregnancy) surgery to correct the opening in the spine can reduce the issues with spina bifida. Very little data can be provided until the research is complete. The only numbers I have been provided with are before the research which you can read about in a previous blog post. The procedure does have risks, such as preterm labor (prematurity…which is said to happen in almost all cases) and of course risks to the mother and baby during/after surgery. Typically the in utero surgery is completed before 25 weeks and the mother and father remain in one of 3 locations (likely Philadelphia) until the baby is born and recovers from it’s NICU stay (usually a couple weeks). Because it is a random study half are chosen randomly for in utero and half are chosen for post delivery. Both are done in another location than Orlando. Post delivery does require surgery to close the back of the spine afterwards and could have other concerns such as inserting a shunt (essentially a tube placed near the brain to drain fluid). This would mean time away from my children during Hope’s birthday and the holidays if I was chosen for the in utero surgery – likely 4-6 months way from Orlando if chosen for in utero and 2 or more months if chosen for post delivery surgery. Again, I have no choices in which options – just that I can choose to participate. It is said that the in utero surgery can reduce spina bifida risks such as hydrocephalus (fluid in the brain that can cause major issues), but again, no proof can be provided until the study is complete.
  • Have the baby fullterm in Orlando, likely at 37 weeks. Trust the doctors, NICU, and neurosurgeons and pray for the best outcome. The option still requires the baby to have a surgery to close it’s spine, this is inevitable. It will likely need a shunt inserted near the brain (as mentioned in the last option). The NICU stay I’ve read typically lasts 2-4 weeks and every baby deals with a variety of issues based on where the opening is on the spine and how much the brain is affected by the “Arnold Chiari Malformation”. The baby has been diagnosed with spina bifida cystica also sometimes referred to as “Myelomeningocele”. It is said to be the most severe type of spina bifida of the three types, however, of this type there are varied levels of spina bifida but typically all babies in this diagnosis suffer from bowel/bladder issues which almost always require catherizing/enemas, medication and continuous check ups with urologists. Many may suffer from bladder and/or kidney infections. Most are affected by this their entire lives. All babies in this range also suffer from mobility issues. To what extent will likely not be known until the baby grows, though we may know more after meeting with the neurologist. I was told today by the spina bifida clinic nurse that most require braces or walkers and most end up using a wheelchair all or some of the time. Some require it because their spina bifida leads them to such challenging mobility issues. Some children due to the lower extremities issues suffer from easier bone breaks, dislocations of the hips, or club foot. There may be some learning/cognitive issues/delays. Most do end up being able to go to school like normal children. I was told most are just “below normal” in terms of learning. If the issues with the brain to become more severe I have learned a handful of babies with this type of spina bifida do require trachs to assist with breathing and/or feeding tubes because their neurological function just isn’t at the level to help them breathe or eat on their own. I don’t have percentages for how often this happens but have been told this could certainly be something for us to endure.
  • Terminate the pregnancy. We are still waiting to hear from the pediatric neurosurgeon on the level of severity they can tell us now, but from what we’re learning much won’t be known until the baby is born, the spine is closed, and we see how the baby would cope with the medical issues. We have kept in mind as we make this decision that we have already been blessed with 2 children. Does this baby or our family deserve to have to endure such significant medical needs? Jason and I both work fulltime and our jobs and how our children are cared for are both important to us. Quitting our jobs really is not an option, I suppose for some that may seem selfish but there just is no way our family could survive on one income unless we lived in poverty. We also have to worry about how the child will be cared for. We’ve been so fortunate to have amazing family and friends here to help when we need help caring for our children, however, to expect them to endure such significant concerns is tough to digest. Of course a big part of us fears the worst, something we won’t know unless we have the baby or unless the neurosurgeon can tell us more before the next few weeks to indicate more concerns. But what we do know is that the baby does already have the Arnold Chiari malformation and hydrocephalus. It scares me to know that as the pregnancy progress this will also likely only progress more, and even more after the surgery. If we decide to terminate, by state law, we have until 24 weeks to make this choice. I have endured so many losses over the years and I never once thought I’d be faced with this decision. But I do definitely fear the odds this baby is against and not just for my baby but for our entire family.

So here’s the survey…now it’s your turn. Give it a moment of your time to tell me anonymously what you would do if you were in our shoes. It’s a decision no one should ever be faced with. I learned today that only about 12 babies every year are born in central Florida every year that are referred to the spina bifida clinic (where all spina bifida kids get care). Yes, just 12 out of how many thousands of babies born every year in central Florida. And only about 300 kids through age 21 are treated there each year. If anything this should speak volumes of the rarity of spina bifida and how we are now faced with one of the cruelest and most trying decisions anyone should ever be faced with. I feel as though rolling a dice might be the only “guilt free” way of deciding, but even then any decision we make will leave us with overwhelming amount of emotions and likely guilt no matter what option we decide. So again, I’m listening…feel free to leave comments (again nothing offensive please) and if you feel a private message is easier you may email me.

UPDATE: 10.16.2010 4:16 p.m.
I’ve closed ALL comments for this post. They are not deleted, however, choosing to close comments in turn hides them publicly. Perhaps when my blog theme is updated soon it will give this option for them to still display because I do not intend to hide them but there’s no need for further comments. I’ve heard more than enough.

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October 14, 2010 - 8:29 pm

Peggy Yandell - I will pray for you I for one know how hard this is. May God help you with this. I did what I thought was right and I stand behind it all the way. No one can tell you what to do and no matter what you do it will hurt. I know this is true. Every Halloween I feel the pain. Just follow your heart and Jason’s because it affects you both and your kids. Bless you and I am so sorry that you have to make this kind of decision sorry i cant spell lol love ya Peggy

October 14, 2010 - 8:47 pm

Cecilia - Which ever way you may decide, just know in you heart you are doing what you feel is best for your family. Many people have strong opinions, but what it all comes down to is you and no one else. You are the judge of what is best for you and your family. Much love to you and your family.

October 14, 2010 - 9:13 pm

Jennifer Ingram - Hi. My Name is Jennifer Ingram and just a few short months ago I was right where you are now. Trying to understand everything that the doctors were saying. They gave me all the bad things but then said they could not give me a real answer about what to truly expect when my son would be born. I got so overwhelmed and I felt that there was no one I could truly talk to. Until I found the spina bifida kids group on babycenter. Hearing everyone’s stories allowed me to decide that I am leaving this all in God’s hands. I stopped reading all the bad stuff and instead concentrated on the stories of everyone’s beautiful children. I stopped second guessing myself and told myself that I could handle WHATEVER God decided. My son also had the myleomeniglcle (sorry I can never spell it right!) and hydrocephalus. HE was born August 4th and is perfect! Yes, he has some issues, but nowhere near as bad as I had expected. He had the surgery after birth to close his spine, and then a VP shunt was put in when he was 3 weeks old. He is still being tested, but I can tell you this. He is the joy of my life. He is my third child but he is my most vocal! He will goo and giggle when he is happy, and scream bloody murder until I finally feed him. And he kicks his little legs whenever I lay him down!
I just wanted to tell you my tale. I know that this is a very hard decision for you. Noone can influence your decision. Only you know what is best for you and your family. But I will pray for you. I will pray that God gives you the strength to handle anything you have to go through. And to help you make the decision you need to.
If you ever want to talk, please contact me.

October 14, 2010 - 10:18 pm

j.w. - My sister-in-law had a baby with spina bifida. She and her husband consider their little girl a blessing.

October 14, 2010 - 10:20 pm

Laura Tellado - Hi Amanda,

My name is Laura (“Laurita”), I’m 23, and I’m both a Valencia alum as well as recent UCF graduate with a B.A. in Interdisciplinary Studies.

I also have Spina Bifida. Over a year ago, I started a blog to try to promote public awareness of SB, as well as to try to find a celebrity or public figure who would be willing to become a national spokesperson.

Despite the many obstacles (for one, I am NOT a celebrity myself!), the blog/cause, called “Holdin’ Out for a Hero,” has had some success, especially in the Central Florida media, and has also been mentioned in national media outlets and prominent Web sites.

I’m not commenting here to go off on a political or religious tirade. I’m just going to tell you that I am a young woman with SB, who’s had 19 surgeries (some very invasive), I have bladder and bowel issues, plus have dealt with many emotional challenges that come with the territory. I’ve been mocked and ridiculed since kindergarten. I also have a shunt.

But, you know what? My parents moved from Puerto Rico to the U.S. when I was three, in search of better medical/educational opportunities for me. I have the BEST family God could have ever given me, and they’re extremely supportive of the endeavors I’m undertaking now.

My blog has now afforded me a remarkably unexpected support system of individuals with SB, parents, and other followers who believe in the cause.

Yes, I live SB, and it’s not always a picnic, but I have a PURPOSE, and I’m so GLAD TO BE HERE.

Please visit my blog at: http://holdinoutforahero.org/

and I am here if you have any questions whatsoever. You can E-mail me, and I’ll be happy to offer my perspective.

May God Bless you and guide you & your family,


October 14, 2010 - 10:27 pm

Lauren - I don’t know how much information you have received from the Doctors, but I’m curious to know where the opening is. I don’t know alot about Spina Bifita (I’m no Doctor), but my good friend has it and with surgery and a shunt he is able to get around with crutches and a wheelchair (when having to travel long distances). I believe his opening was lower on his back…he only lost feeling below his knees I think. You can read about his story at http://www.our-view.com or email him at arthur.L.aston@gmail.com I already told him that I was sharing his info with you, so he’ll know who you are.

I know you’re probably getting bobbarded with information, but he can tell you first hand what it is like to live with Spina Bifita.

October 14, 2010 - 10:28 pm

Jen - Congratulations on your pregnancy! I was in your position early this summer. You and your husband have an intensely personal decision to make. I think that the outlook for a kid growing up with spina bifida is a definite possibility, but from what I’ve learned things are generally better than what you’ve described above. If you choose to have this baby I encourage you to find your nearest myelo clinic and see the docs there for delivery, closure, and follow up. (The first neurosurgeon we met with at the first hospital we were referred to did only 1-2 closures per year! We found another after learning that.) I think there might be a Shriner’s near you. Most people seem happy with the spina bifida care they receive there. For us, we have chosen Boston Children’s Hospital and the Advanced Fetal Care Center has been an amazing resource especially when we were where you are right now. I know you are no where near Boston but I am sure that they could help you find more resources closer to home.

October 14, 2010 - 10:37 pm

Julia - First, I cannot imagine what you may be going through so I applaud your courage in seeking the opinions of others. This must be a very difficult time so I’ll say a little prayer that God will walk with you through it. Second, I know a family who participated in a program similar to what you are referring to above. They live in Texas and Mom had to relocate to San Francisco for an extended period of time. Yes, it was not easy by any stretch of the imagination (especially with four children back home), but the looks on the faces of these parents when they were finally able to bring their beautiful, healthy baby girl home was absolutely breathtaking. Their journey was soo worth it in the end. Finally, you want to know what your readers would do in this situation. I, too, would choose the MOMS research study. My husband and I are having a very difficult time conceiving and if this was the situation we had to deal with after finally getting pregnant, I think we would hop on the first plane out to California. Only you know what is right for you, but I will pray for you and your family as you make this decision.

October 14, 2010 - 10:55 pm

Yvette - I am on the BBC board and just wanted to share my personal experience with SB. 4 years ago I was in your same shoes. I am a teacher that works with special needs kids and knew about SB more than a typical “lay” person. My husband and I were broken hearted. We were given the most grim ideas of what our son would be like. He would not walk, talk, he would be a vegetable. With all that horrible info I was leaning more towards terminating. I actually made the appt to do so. I was in such turmoil because I was in love with my son, could feel him and had already seen his sweet face on US. When we got to the hospital for induction, my husband and I just had this feeling that what we were doing was not for us. I knew I loved this little guy. We were ready to do whatever we needed to do to keep him and we did. Mind you, I am a teacher and he is a fire fighter and the money isn’t always there. But, I will tell you what. I work and my husband works. We have a regular nanny that takes care of both my kids. I chose to keep my kids home. My son is the most beautiful boy. He smiles, talks, walks, runs and has no issues with bladder or bowel. We are still working on potty training. Please don’t give up. I think it will forever haunt you. Your baby will be perfect and just fine. Most of the things that they describe (trachs, feeding tubes..) are few. My son also has Chiari but hasn’t shown any issues. Oh, yea…and he had severe hydrocephaly and has a shunt…only one shunt since birth…and is smarter than a whip! Please feel free to call me or email me at trendy3235@AOL.COM. I have alot I can share with you.

October 14, 2010 - 11:22 pm

Tracy Autem - My heart goes out to you as my sister and her family did the MOMS study this year and just had a beautiful little girl. I am a fellow photographer and here is a blog post about her, her newborn photos as well as her homecoming from the study. There is also a link to my sisters blog about their journey through pregnancy too now. http://lightlyphoto.com/blog/welcome-baby-ruth-newborn-documentary-photography-by-tracy-autem/

October 14, 2010 - 11:32 pm

Kevin M. scarbrough - You will make the right choice, Amanda, from your three valid options. It will be the right choice because you made it, the force of the decision do massive cleaves away the possibilty of being wrong.

I wish you well and peace, however it may yet be found.

October 14, 2010 - 11:45 pm

Lisa - Hi Amanda,

What an incredibly difficult decision. I have been in very similar shoes and wanted to share my experiences in an effort to help. My husband and I have one biological son. Due to several factors, we decided to pursue adoption for our second child. After much prayer and soul searching, we decided upon China. We expected we would adopt a female “normal” infant and rode along through the difficult and arduous process of adoption. After waiting about a year, our agency asked us if we would consider special needs. Honestly, we had not even talked about it, but again after prayer and soul searching, we decided we would look into it. We met with our pediatrician and explored many areas of disabilities that we might encounter in our search for a child. Well, spina bifida remained on the list, although, we honestly didn’t give it much thought. One night, as I searched through our adoption agency’s “waiting child” list (where special needs children were bioed), I saw the photo of a beautiful child who stole my heart. He wore the same jacket that my biological son had at the same age, which grabbed my attention. Anyway, long story short, my husband and I both felt he was “the one”. He did have spina bifida (myleomeningocele), so we researched his disorder and spoke with physician after physician, read everthing I could get my hands on in the library and over the internet. We pursued the adoption, and brought our little Benjamin home in May of 2008.

It has been a long, and at times, difficult road. He has had several surgeries already, faces bowel and bladder control issues, wears braces on his legs, etc. BUT I WOULD NOT TRADE HIM FOR ANYTHING IN THE WORLD. We chose to bring him into our family. I am no saint, believe me. I struggle with all of his issues as any mother would, but he has taught me that children are far more than their disabilities. He is a loving, charitable, giving, affectionate, intelligent, mischevious, wonderful child–despite his disability. He is not his disability. We are attempting to raise him this way too. We all have struggles in this life. Each of us has parts of our bodies, minds, emotions, etc. that don’t work the way we want them to all the time. Our son is told he can do anything he wants in life. He is taught to never give up. In turn, he teaches us to never give up…to never give see an individual as his or her disability–they are so much more. Most of all, he teaches us how empty our family would be without him.

The decision you have to make is difficult. I wish you all the best.

October 15, 2010 - 8:00 am

Jaime Scott - I’ll start by saying that I am not in your position and I can’t fully know or understand all that weighs on you and your family, so I realize it is way easier for me to say all of this to you than it is to actually be where you are dealing with all of it. With that being said, I think you have to ultimately put your trust and complete confidence in God, the God that made you, the God that made this baby, the God that loves your family and wants the very best for all of you. He is in control. Let Him be in control. I don’t believe this baby was an accident and I don’t think that he/she was accidently put in your family. God is the Author and Creator of life, the Giver of breath. At this point, I think it’s a matter of walking by faith and not by sight. You see all the hard things, the darkness, the mountains in front of you, in front of this baby, in front of your family. But I believe God wants you to lift your eyes up (above those mountains) to Him and place this baby and your family in His hands, believing that He knows what is best and that He has good plans for all of you. Obviously, you want to know as much as possible to be prepared for this baby, but I don’t think you should use that information to make and “informed” decision on his/her life. We can’t ever know the future or what is to come (not even with a perfectly healthy baby), but we can trust a God that does. God has a way, a way through the dark, a way over the mountains. I don’t know how hard it will be, but I know that God will give you the strength if you look to Him and trust Him. Trust Him.
“And I will give you treasures hidden in the darkness – secret riches. I will do this so you may know that I am the Lord, the God of Israel, the One who calls you by name.” Isaiah 45:3

October 15, 2010 - 9:38 am

Ces - Hey Amanda. You are a very intelligent and thoughtful person, so whatever you decide will be the best for your family – its seems like none of these decisions will be an easy road. I have no idea about spina bifida or even about children in general. But I know life is hard and it hurts – and that is without having to overcome a any kind of serious disability. I don’t think any of your thoughts are selfish, you have to think of the whole picture and the future. I will keep you in my thoughts as you and your family make these decisions. I and the many others who think highly of you will support whatever you decide.

October 15, 2010 - 10:48 am

Becca Monroe Ulmer - I am not one who would normally put my 2 cents in on such a personal decision but I know that if I were in your shoes I would appreciate as much honest input as possible. First of all I wanted to share one of my own personal experiences. With my most recent pregnancy I was told that she had a higher than average chance of having down syndrome. I know that down syndrome and spina bifida are not the same thing, but it still made me stop and think about what to do because if she did in fact have the condition, it would be a life altering circumstance for me and our whole family. Ultimately I decided not to have anymore tests done to find out if she did in fact have it because I realized that no matter what I would still go through with the pregnancy and leave it all up to God. Because I truly believe that God has a plan for all of us and we may not understand why or how he could do this to/for us but we have to have faith that he will help us through it. I truly feel that the only “guilt-free” decision we as humans can ever make is one that has been put in God’s hands because he is the only one that sees the whole picture. He is the creator of that blessing in your body and has already given it a purpose in life, although we don’t yet know what that is. I will pray for you and your family during this difficult time and I pray that you will trust that God will be with you throughout all of this.

October 15, 2010 - 10:57 am

Christina - HI this is Christina, Mia’s mom, from the Babycenter Board. I am sorry that you are in this position – I am sorry that any mother every has to hear the news that their child has Spina Bifida. However, for as difficult as it may seem, it does instantly become second nature when your child arrives. My very best friend has a half-sister. About 6 months before I became pregnant with Mia my BF called me crying because her sister had decided to terminate her pregnancy due to Spina Bifida. Now every time I see her sister at birthday parties for my BF’s children or other events I am always taken back by the extreme empty sadness in her eyes as she watches Mia happily playing with the other children, as if she is thinking abut what could have been. I am not sharing this to make you feel bad, it is just such a real example that I deal with.
Mia is a gift from God. She has taught our whole family what beauty is, what determination is…what is important is life. Yes, her milestones may be delayed – but all we really have is time, life does not need to rushed. And when she does reach a milestone, say pulling to stand, is is a miracle and a tremendous reason to rejoice in the grace of God.
I am rambling – I will say a prayer for you for guidence and peace in whatever you and your husband decide. Feel free to email me if you would like to talk.

October 15, 2010 - 12:49 pm

Jennifer Krouse - As I sit here watching my son nap, I can only think back to when I was in your shoes. THe diagnosis of SB if a hard pill to swallow, and the pain of the loss of the “typical” child is real and hard. However, once you see though that and have this gift from God in your arms, all that indecision is erased. I would give Charlie up for anything in the world. He is perfection, even without the use of his legs, even with a shunt, even with a scar across his back. He will never be a burden, and we hope to have another child too. In fact – our only hold up is not SB, it’s my other medical issues with pregnancy. This all just makes me so sad. I imagine any person who voted for termination on your poll doesn’t have a child with SB. They only imagine the hardships, they don’t know the joy.

October 15, 2010 - 12:52 pm

Megan - Hi Amanda,
You know me from the babycenter board. I am so sorry, again, that you are facing these choices. Obviously, I gave you my honest to goodness vote as to what I DID in my very similar situation…however I am very uncomfortable with the poll… I hope you are not going to base too much of your decision on the results, for two reasons:
1. You are not me, and you are also not any of these other voters. This is YOUR choice.
2. Many of these people, as kind-hearted and sympathetic as they are, cannot truly understand the position you are in. This is not a black and white decision, and so many personal factors play into this, including (as you mention) the lifestyle changes that are involved. Poverty is just one. So, trusting this poll is highly unscientific… some voters cannot truly understand the visceral, heart-wrenching, overwhelming nature of being given a diagnosis of SB, whereas some can.
This is not about what they would do, it’s about what they WILL do to support you, whatever you choose. Are your friends going to turn their backs on you as a result of you terminating? Is poverty worse than that happening? I live in Canada, which on the surface is the same as the USA, except that in my social context, that is a much less worrisome issue. You live a very public life on this blog and are opening yourself to retribution from prolifers. Are you going to be able to get counseling to cope, if your support network isn’t enough?

The comment previous is an excellent example. How do we know that this woman who terminated is sad years later (normal), or wallowing in guilt and regret (not normal, needs therapy)? If you make the decision to terminate, will you wallow in guilt and grief, or will you be able to move on? Will you be able to accept that you made the most compassionate decision, one that you can live with?

Today is Pregnancy and Infant Loss Remembrance Day in Canada…Awareness Day for you. I find that I am changed, and am a part of a new club. It is like I have become a silver cross mother on November 11. One day for everyone to share this with. I remember him every day. I do not regret.

The issue in my eyes that you need to face, is that your baby is very sick. He/She will likely die sooner than you’d like. This is something you will grieve if you terminate or not. You will love your baby, whatever you choose. I believe that if you’re not sure, you need more time to think for yourself, more opportunity to talk with your DH and family, not a dozen other opinions! You can always turn to the boards for people who have at least walked in your shoes.

Much love and hugs to you, and do contact me if you need someone to talk to.

October 15, 2010 - 1:35 pm

Lexi - I just wanted to remind you what you said at your 13 weeks blog and keep the faith that any problem is worth keeping your baby. Please fill free to check our blog at http://daddysprincessemma.blogspot.com/ and to send me an email.

Prayers and love for you and your family!

(Regardless if if this little one ends up having any special concerns, I know it will not cause me to love it any less than I love the two children I have now. However, knowing news such as this would certainly help prepare our family in how to handle news like this)

October 15, 2010 - 3:00 pm

Jamie - Amanda, I’ve been following your journey and wanted to send you my care and support for whatever decision you make. I haven’t walked in your shoes, but I’ve felt a connection with you because I, too, miscarried (twice in the last year and a half) and am also now expecting. I just wanted to add that for almost two years, we lived below the poverty level. It wasn’t pretty, but I want to reassure you that we made it work. There are many, many avenues of support available. I hope that whatever decision you make, you won’t be put in such dire straights, but just know that if you do find yourself in need of financial support, it is there for this very reason. I hope you find some clarity in the coming weeks and will be thinking of you and your family.

October 15, 2010 - 3:28 pm

Jaclyn - I was in your position a little over 4 years ago and we did terminate our pregnancy. We were so excited for him and found out at 16 weeks of his condition. It was my very first pregnancy, in fact, I was one of the first of my friends and the first in my family to be expecting so everyone knew. Do I have regrets, yes, but when I look in the faces of the 2 healthy boys I’ve had since, it is hard to go back in time. What concerns me the most about this blog is that because you are so torn about your decision you don’t want to make the one that will cause you to regret the most. During my time, I decided within 3 weeks, there weren’t too many times I thought we should continue. My husband felt the same way. You on the other hand, are considering continuing which kind of makes me think terminating will leave you in a very dark place. I had no history of depression or any tragic event in my life prior yet cried every day for weeks and had moments months later that made me feel as if I did the wrong thing. Then I was pregnant. I know too many people who have made the same decision as many and quality of life has been our main concern. We have all been in your shoes yet one thing we have in common is that we didn’t question our decision when it was happening. This part alone, makes me truly feel you should continue. You do not want to be in the shoes I wore having been on the fence. Hugs and good luck!

October 15, 2010 - 3:55 pm

Steve - Amanda, termination, no matter how hard the road ahead looks, is not an option. There is life in you dear sweet child. Do not terminate what will be a beautiful testimony to many people in the future. I promise you will love this child unconditionally. Many people have gone through this kind of situation before. My cousin is now 40 with Spina Bifida and he is an extremely smart, loving and caring miracle. Don’t chance the possiblility that one day you will wonder what could of been, and regeret it. One day this baby might just make a difference in the lives of others. Check out the guy from wwwlifewithoutlimbs.org he is a true inspiration. May God Bless you and the descision you have to make with the other two true options.

October 15, 2010 - 5:38 pm

Stephanie - Praying for you as you make this decision. I was born with hydrocephalus 25 years ago, and I have many friends with SB. They all have their physical challenges, but they are some of the most joyful, happiest people I know.

October 15, 2010 - 6:34 pm

Dad - Every life is a precious gift and you will never know how blessed you will be by the burden of medical difficulties. I remember holding a young daughter who was in agony and know that I was blessed by being able to comfort her in those moments and continue to be blessed by knowing what a wonderful young woman she’s become as she raises her family and struggles with the difficulties of life.

October 15, 2010 - 7:00 pm

hm - Hi, Amanda. I have been following your situation on babycenter. I am so very sorry you’re facing this wrenching decision and that your baby has unexpected, frightening anomalies. I can’t begin to imagine your anguish and concern, your torment, fear, grief, and anger.

I have never been in your situation, so I can’t presume what I’d do with any certainty. I think I know, so I did vote. Of course, only you will know what is right for your, your child, and your family. I only wish you peace and strength as you go through this process.

I wanted to offer you support as you consider all your options. I saw the responses on 2 different boards, and honestly, I was very surprised that so many people were angry about the poll itself. The hostility took me aback.

I think that a poll is one tool, one angle in an excruciatingly difficult consideration process, and I totally support your reaching out to everyone you can just to hear ideas and perspectives. It makes a lot of sense to me, though I have never been in a situation like the mothers on either of the 2 boards to which I refer.

I’m an adult woman w/ a different neurological condition, one that developed in my twenties. My illness can’t compare w/ spina bifida, but it could lead to disability, so I think a lot about canes, wheelchairs, mobility, caths, brain function. As I’ve grown older, my attitude toward disability has evolved, perhaps out of necessity as reality sets in. My attitudes about disability pingpong about quite a bit actually, which I think is ok, practical, and healthy. I live w/ ambivalence, which is ok w/ me.

I would recommend visiting an interesting blog about life w/ disabilty. It’s written by a woman w/ MS, not spina bifida, but she has provocative takes on life, in general, and posts lovely pics. as well. She doesn’t post anymore, but the archives are there to peruse. Google retired waif at the wordpress site, if you’re interested. She also maintains a lot of links to different disabilty websites, that sometimes make an interesting read.

When I was very sick a few years ago and living w/ a disabling relapse, I found the retired waif’s blog a source of ideas to mull over.

~ I just wanted to say that I’m thinking of you and your family. This is so terribly hard, I know. I just wanted to reach out w/ support, and w/o judgement.

October 15, 2010 - 7:00 pm

Jamie Lea - I’m so sorry you are in this position. I had a baby who was (unexpectedly) stillborn 10 years ago. If I had to do it all over again knowing the outcome, I would. I was able to carry and love my baby for as long as God allowed it. Then I was able to see him, hold him, take pictures with him, and kiss him goodbye. Was it gut wrenching? Yes. Do I cry for him even today? Yes. But I would much rather have the sweet memories that I do then the regrets and grief knowing that it was me who ended his life. May God bless you, comfort you, and lead you in your decision. Hugs and prayers to you.

October 15, 2010 - 7:27 pm

Guy J. Sagi - I don’t pretend to know everything, so I didn’t vote. I do know this, however. My granddaughter was diagnosed with a rare cancer called retino blastoma (I may be wrong on the spelling) before she was a year old. It’s serious stuff. She’s lost one eye to the cancer and is legally blind because the cancer developed in her other eye so they’ve lasered and radiated to save her (she’s not even in school yet). The way I understand it, the cancer likes to grow in the eyes and travel through the optic nerve to the brain, but I’m not a doctor.

She is the most awesome young lady on the planet. OK my wife and her mom have her beat, in a different way, but I love every second with my granddaughter. I too take photos, obviously not as well as you do. But every time I’ve gone into the yard with my granddaughter she shows me something I totally forgot was worth photographing. Her sense of feel made me look at leaves in a different way. Wow, there’s a texture I can explore and share that I’ve ignored (I like macros because folks often overlook the beauty around them on a daily basis)? I never got the pecan leaves done right, but I haven’t quit and I’ve run strobes dry trying. Her description of the wind in her face during a go-cart ride made me spend two days trying to capture that innocent feeling I thought I’d outgrown (I only quit after she flew back home because the energy she shared was gone once the non-optically challenged grandsons were the only ones who remained). You had to hear that 4-year-old describe how her hair felt. She helped me remember my first go-kart ride. The photos stink because I’m not as adept with a camera as you are, but I hope you get my gist.

I see the world in a whole new, wonderful way when I’m with her. She’s blind, and very sick, but she eagerly reminds me of all the neat stuff I overlook. Wow. I’m so glad she’s here and that we can discover/rediscover these things. I can’t speak for her. All I can tell you is the hugs, excitement and genuine and palpable love is there.

The challenges you face are very different, but similar, which I hope somewhat explains my not voting. I also have an adult daughter who’s a quadraplegic. I wouldn’t trade her for the world. She helps me see things in a different way. She’s a little to old to share new feelings with “papa,” but I’ve photographed some pretty cool stuff after she became comfortable with her situation (e-mail me and I’ll send you a neat one with her on an ATV doing a wheelie).

AND, just so you know what a non-artistic difference taking photos makes, try this on for size. When my granddaughter was barely able to crawl, I took photos of her and told my daughter it was weird direct flash on her always resulted in red eye in one eye and not the other. I never dreamed that it would be this serious, but when my daughter gave the digital images to the doctor, the previous diagnosis of “lazy eye” was quickly dismissed and specialists were called in.

October 15, 2010 - 8:24 pm

Kris M. - Hi, I just happened to hear the buzz about your bbc posts and thought I would check it out. My daughter Devyn will be 3 in December, and she has spina bifida level L3. When I was pregnant I was so distraught when I learned of her diagnosis. I am sure you know that distraught doesn’t even cover it. It was terrible. I had many people suggesting and pursueding me to terminate. I am and have always been pro choice. I even went as far as to find a clinic where I could have an abortion if that is what I decided. However, I decided that my need for normalcy did not justify killing my own child. She was my baby, and maybe we would have difficulties ahead, but I knew that once I had her I would die for her and none of that mattered. If my older son happened to be hit by a car and paralyzed, I would not want to terminate him!
I know that many many women terminate when they recieve this diagnosis, so I won’t be surprised if you do.. However I think that really sucks and am insulted for my child and all the people out there with spina bifida leading normal happy lives. Sad that a lot of people hold so little value for those who are different…
I am so thankful I decided not to terminate my sweet girl Devyn. She is such a cool little girl, beautiful, funny, smart, and a joy in my life. So scary that I almost missed out on the chance to know her..
You will think the same thing of your child someday, you should do yourself a favor and give that little person a chance.

October 15, 2010 - 9:19 pm

joanna - My heart is breaking for you for so many reasons – remembering that day – the day my heart threatened to stop beating forever – the day we were told our baby not only had SB, but had an extremely rare form that would either lead to a severely handicapped child (unable to eat or breathe without tubes and ventilators, unable to talk, walk or understand much of anything) or a child who would die shortly after birth. We were devastated. I assure you they talked immediately about termination and I just felt numb and dead inside at the thought – either way I felt I had already lost my baby. It was the worst day of my life. Do you want to know the best day? The day my son, Jet, was born. :) My angel, miracle, precious baby. He didn’t die. (to read more about the pregnancy story please visit http://www.babyjetstory.blogspot.com) He eats, breathes, walks, talks (well..says momma and dada – he’s only 16months old :) ), smiles, laughs, hugs, plays, snuggles and does everything I once thought he would never do. He does have Spina Bifida – but he IS not Spina Bifida – he is so, so much more -he is the baby of my dreams – the baby I thought I would never have – the baby I thank GOD for giving me – the baby I just tucked into bed. :) So please, please. I beg you not only for your baby who represents my own sweet little boy just 2 years ago…but for your sake. I won’t lie – the pregnancy – all the worrying and the waiting was so hard. I cried many a night just in fear for what was going to happen. But I prayed. Boy did I pray. Prayed healing and strength on my unborn baby – an I’m convinced to this day that God healed him in ways I’ll never know. Jet’s lesion (the opening on his back) was very large. Unusually large. But he is able to do so many things beyond our expectations. He’s got a wicked scar on his back that I’m sure will make him a chick-magnet in his teens. lol. I could go on and on. I’m so in love with him. And, Amanda, we are REAL. We are not some sappy Hallmark movie where they exaggerate the happiness of otherwise tragic situations – we are genuinely, sincerely happy. We marvel and say “if only we had known then….we wouldn’t have been so scared.” And I am not the exception – every family I have EVER met with a child with SB says the exact same thing – we wouldn’t trade them for the world – they are more amazing than we ever imagined – if only doctors could show you the children – and not the worst-case scientific scenario. I am praying for peace and comfort and strength for your family right now. Please feel free to contact me and please look at our family blog http://www.babyboypenny.blogspot.com – it is my testament to my son and the blessings we share.

October 15, 2010 - 11:09 pm

Susan - Our situation is a little different because my son, Jacob, is adopted. We got him from the NICU at 7 weeks (met him at 3 weeks)and were told that there were many unknown factors concerning his development. Although we were not faced with the decisions you are now facing we were faced with the question of whether we would adopt him and how his development would go. I can tell you that he is one of the greatest joys of my life. He is extremely intelligent and personable. He cannot walk, but gets around very well, attends regular Kindergarten and took swim lessons at the YMCA. He is definitely a typical boy in his likes and dislikes and he and my husband do woodcrafts together and he helps my husband do things like work on the car. He already knows more about tools and trucks than I do. He had surgery on his spine when he was only 3 days old and had the same type of SB your baby appears to have. He leads a very full, active life and I am sure that will continue. I know he has challenges ahead but I am also sure that he will overcome them. All our lives hold challenges but that does not mean life cannot be incredibly wonderful!

October 16, 2010 - 9:24 am

Erica Reynoso Montalvo - Dear Amanda & Jason…A lot of ppl will agree, a lot of ppl will disagree. None of these ppl will have to deal with the effects of your decision. If you keep the baby, you will feel the love, joy, heartache, and pain. If you terminate the pregnacny, you will deal with the pain and sadness. No one else. I pray for your family. I love you, admire and respect you. You are wonderful human beings. You will make the best decision for your family. You always do. We do the best that we can, with what we know at the time. Best to you always. <3

October 16, 2010 - 9:41 am

Shanna - I just want to say I love you! Whatever decision you make I will support. I think for every person the decision is different for different reasons, personality, financially, etc etc. So, just know that even though it feels like I am a gazillion miles away, I am here. Even if I only listen and expect to hear your voice occasionally. Also, I think you should write a book!!!!

Love you…BFF

October 16, 2010 - 10:18 am

Lacy Williams - I’ve been in your shoes but never had to make the decison to terminate or not. It was never an option for us because we strongly believe God creates EVERY child perfectly. Just because the world views kids with disabilities as having something “wrong”, God sees these kids as special and perfectly made. God has never given me the right to kill any of my children…it’s up to Him to take them when he’s ready for them. My daughter, Autumn, is one of those 5% with SB that has severe ACII issues. She has a trach, on a vent, can’t walk, can’t talk on her own, can’t eat by mouth. Makes it sound like she can’t do anything but that’s not the case. She’s FULL of life and joy. She communicates through sign language, she’s healthy, she army crawls ALL over the place and gets into everything like a typical 2 year old. She has temper tantrums when she does not get her way, she laughs (without sound) when we do funny things, she loves playing and fighting with her 2 older siblings. She’s perfect. These first 2 years have been difficult with surgeries, etc but she gets stronger everyday. Autumn has completely changed our lives and I think this is why people who have children with special needs can not even comprehend why people who have not had one wants to terminate or give up on their unborn child. Until you have held a child with SB in your arms and watched them go through surgery, have spent hours in therapy and then you see how they view life compared to us it’s a life changing moment. You realize how ignorant you ever were to think that this child was not worthy of life. You are taught compassion, tolerance, miracles, hope, strength, sacrifice, and so many other wonderful qualities. I’m blessed that my 2 older kids are learning all these at such a young age and it even changes the way they see and treat other kids as well. I’m not going to lie…it’s a challenage but it’s worth every second to have my little inspiration in my life. I think termination is selffish. It allows you to get rid of your “problem” so your life will not be interrupted. It’s not about saving your child from a hard life. If you look at EVERY one of our SB kids not ONE of them is miserable and/or unhappy. Each of them embraces life the way we should. If you do terminate…you will miss out on the greatest blessing God has ever tried to give you.

October 16, 2010 - 11:27 am

Kim - Hi Amanda. My 7 yr old son Drew has spina bifida and was #4 at UCSF to have fetal surgery in the MOMS study at 19 gestational weeks.. I can offer you much hope and would love to listen as I remember too well exactly how you’re feeling right now. We will be in Orlando in a few weeks as well and Drew is a pretty amazing kid we wld be honored to have you meet him

October 16, 2010 - 12:08 pm

melitab - I hurt for you. I know these are difficult days for you. The stress of the unknown is so often worse than the reality of what is. That’s true with all of life everyday, for everyone. The what if’s and what might be are overwhelming. Regardless of the decision you make today regarding your baby, life is not going to be easy. Some of life’s greatest gifts and joys come at great cost. We value more that which costs us more, more risk, more work, more faith, more effort. It becomes worth more to us. I have never meet a Sb child who wished they had not been born. But beyond the baby. What about you and your husband? Can you deny yourself the joy, the love, the unequaled experience, the leap of deep faith that Hope will bring into your hearts and home? For your sake, if only for you and no one else, don’t refuse this precious gift.

October 16, 2010 - 1:48 pm

hm - Hi, It’s me again. I’m just so haunted by your situation, I guess I felt compelled to come back and comment once more after reading some of the posts over on babycenter.

In my previous comment, I didn’t mention which option I voted for, but given the vocal opinions from different sides, I guess I’d like to weigh in.

I do not have a child w/ spina bifida. I do have a neurological illness, which I developed as an adult. I’ve also have had a termination and seriously considered TFMR.

I voted to keep the child. Personally, I would most likely choose the MOMS study, as I am a research, progressive oriented type person. It is in my nature to do everything I can possibly can in any situation. But that’s just me. My oldest child has/had some mild developmental delays and I have done everything humanly possible since he was born to help him. While it’s been difficult sometimes, I haven’t found the changes in my life to be a burden. I love the way my life, my mind, my perspective has grown. I’m so much more interesting now! So again, it’s just in my nature to strive, try anything, and never give up. But if I didn’t participate in the MOMS study, I’d still CTT.

I’ve had a termination for non-medical reasons as a teenager. I wouldn’t call it a “choice”, as I did it bec. I felt the personal safety and wellbeing of myself and my family was at risk bec. of a volatile social situation. I think I would make the same “choice” if I was in exactly the same situation. But I want you to know that even 25 years later I still grieve over the loss of the child. And I was only 7.5 weeks along. I have been deeply sad about it my entire life. I so wish that wasn’t part of my past.

In my last pregancy, I had elevated risks for DS. While waiting for the amnio results I very seriously considered termination. I even called a clinic and visited the TFMR on bbc. I was that serious about it. I played it out over and over in my mind to prepare. But the idea was driving me to the point of a breakdown. Before I got the amnio results, I began to lean toward adoption if the results came back positive. The idea of ending the pregnancy was too much for me to bear, especially in the 2nd trimester, after seeing and feeling the baby. I’m not a religious person (actually I’m an atheist) so it was simply my own human feelings directing me.

Adoption presented itself as a very good solution, since I didn’t feel able to care for a child w/ special needs, given my own physical limitations.

Many people,good people, will come forward to adopt a child w/ special needs with open arms. This wasn’t an option on the poll. But perhaps this could be one more avenue to consider?

Peace and strength to you–no matter what you decide. I noticed you’ve gotten quite a bit of flack on bbc. If you want to chat or vent, you can email me if you’d like. I’ve given my own opinions, since your poll asked for them. But I wouldn’t presume to judge you or steer you. You have to make the choice for yourself. And if you’d like to chat, feel free to email. best wishes.

October 16, 2010 - 1:59 pm

Christy - Hi Amanda,

We have a five year daughter named Gillian who has spina bifida (myelomeningocele), hydrocephalus, and the chiari malformation. We created a blog for her right after we were told of her diagnosis at 20 weeks. Please feel free to read it (I listed it in the website section). I feel for you during this time. I was in your shoes 5 and a half years ago. Our daughter has turned out to be an amazing and incredibly talented person. I could not imagine life without her. We also have a son, so I understand your concerns about affecting the other members of the family and the family dynamics. But I have to say that Gillian has brought so much joy and true fullness to our family. We are better people and parents because of her. My son is a better person because of her. Gillian wears braces and walks a little differently, but people are amazed when I tell them her diagnosis. You see, on paper, she sounds so scary. But in person, she is a beautiful, talented, strong willed, outspoken, amazing little girl. She likes to draw, sing, and bug her brother. She was just in a talent show at her school where she sang the whole song “Tomorrow” from Annie! Yes, she does have different challenges from typical kids her age, and yes, I was afraid to include those challenges in our life. But, like I said, I can’t imagine our lives without her!

October 16, 2010 - 2:36 pm

Stacy Picard - Amanda,

You seem to think no matter what choice you make, you will be filled with guilt. I have never known any mother of a child with spina bifida to feel any sort of guilt over giving that child the gift of life, and I have known a lot. I have a son with spina bifida. He is the youngest of five children, and he has brought a new aspect of life and vitality and joy to our lives. He is incredibly happy and does not let his disability stop him from living a full life–the kind of life that inspires others. Please don’t take this opportunity from your child. There is no way we can protect our children, whether they have disabilities or not, from all pain and suffering. And children with spina bifida do have to suffer at times from things that the rest of us do not. However, this is not to say that their suffering is necessarily greater than able-bodied individuals; just different. I have never known a person with spina bifida who felt they had suffered so much they wish they had never been born. I have known able-bodied people who felt that way.

October 16, 2010 - 3:03 pm

Cindy Price - Amanda my heart goes out to you. I still remember vividly over 23 years ago finding out our unborn baby had spina bifida. You can read our story at http://www.spinabifidasupport.com/pricefamily.html .

We have never for a second regretted bringing our son into the world. He has blessed our lives in so many ways. And more importantly he loves life and is happy with who he is. And his siblings love him too. The journey has made our whole family stronger and we appreciate life so much more. I wish you the best and hope you find peace.

October 16, 2010 - 4:01 pm

Susan - I had my kids before the MOMS study. I chose to give my kid a chance. I have two older kids, both in college now. My daughter with SB is now 15 and learning to drive. She is a good student, played wheelchair basketball for a few years but quit because of the high school academic demands, etc. She has tried downhill skiing and loved horseback riding. She has even gotten a first place in dressage (horseback riding). She won the school spelling bee in elementary school and went to the county bee. She takes honors classes and does well. She wants to be a teacher or pediatric physical therapist. She babysits. She doesn’t walk anymore, but I have to say, walking isn’t that big of a deal really. It is just one way, of many, to get from one place to another. She has friends, the teachers love her and she is mostly happy. I say mostly, because she IS a teenager ya know! She has had a few medical challenges over the years but it has made her a stronger and more independent person , one that can make her own decisions and understand the consequences. Don’t let fear of the unknown make your decision.

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