Amanda Kern

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

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.
Sincerely,
Jennifer

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,

Laurita

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.

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.
Yvette

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.

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

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.

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.

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)

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!

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.

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.

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.

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.

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

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.

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.

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!

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.