My baby has spina bifida

“Today is the tomorrow you worried about yesterday” —Unknown

Here is the big news. I will not prolong it. Today the doctor confirmed through ultrasound that my baby has spina bifida. As I struggle to find the words to share this most recent update I find it only appropriate to share the only photo I have from today of my sweet little one who we realize will likely face it’s life ahead with more challenges than we are able to comprehend.

ultrasound-09282010

From this image and the many others I have seen in weeks past the baby has seemed so perfect and lively, however, after undergoing such a thorough ultrasound with the absolute best equipment that Winnie Palmer Hospital has to offer we were told the harsh news that the baby does indeed have a neural tube defect. There is no cure or easy way to prepare us for what is ahead for our family and this baby. As perfect as our baby has seemed for the last 17 weeks we have learned our child will be born with imperfections that have great risks that are frightening for us all to still accept.

The ultrasound showed clear indicators for spina bifida and after the ultrasound was over the doctor spoke with us to confirm the condition. My heart stopped and I just prayed I wasn’t hearing all the bad news. But there is no avoiding the concerns the doctor spotted on the ultrasound. They shared with us an image of the top of the baby’s head that showed a less than symmetrical front of the baby’s head. Typically in a healthy baby it is more perfectly round. They showed us the images of the baby’s brain and it was evident that there was additional space which is not normal. There was also a curved nerve spotted toward the back of the baby’s head, shaped like a banana. Of course I have no medical background, but I trust that the doctor’s diagnosis is correct. Apparently this nerve isn’t typically shaped in this way which indicates the neural defect the baby has. The last indicator, which is the cause of this defect, is that a spot in the baby’s spine never closed. Therefore it has an open spot on the baby’s back where it’s spine is open and not covered with skin. This is the reason why the AFP hormone levels have been so high in the most recent lab test because this open spot in the spine causes the AFP levels to leak into the amniotic fluid in turn causes my lab results to show this high level. Yes, it all sounds so frightening. The only optimism we received today is that the opening in the baby’s spine is in the lower portion of the spine so it may decrease the extent of any potential paralysis.

With neural tube defects there are higher risks for other chromosomal defects and risks that could make the outlook much more uncertain. It was suggested that I undergo an amniocentesis to help give us the 100% certainty of spina bifida as well as help rule out or confirm any other complications the baby may be suffering from. Needless to say we were taken by emotions and the shock of not only understanding all this news that was being thrown at us but we now had a big decision on whether or not to go through with an amniocentesis which does have it’s own sets of risks, including potentially miscarrying. At this point we felt it was in our best interest to help learn of any issue the baby may be suffering from now in hopes that they would rule further complications out. As much as we do not want to know this news because it is so heartbreaking for us, it will only help us better prepare for what we have ahead as well as whether or not complications are too severe for this baby to survive. I underwent the amniocentesis today and now we wait 1-2 days for preliminary results and about a week for final results of this test.

I’ve stopped trying to understand how or why things like this happen. And I have heard so many of you give me the positive reassurance to look at the odds being in my favor. However, if you look at my odds, they have never been in my favor. Odds that I still don’t understand:

  • A risk in a miscarriage is 1 in 5 pregnancies (20%) yet I have miscarried 3 of this six times I’ve been pregnant and hold so much uncertainty now for this little one. The risks of the amniocentesis are small but they do increases chances of a miscarriage. Also, there is a fear that any additional complications could lead to the suggestion to terminate the pregnancy if the doctor’s feel the complications are too severe.
  • After the last miscarriage and going through the D&C surgery I recall asking the doctor’s what was the chances I’d need a second or a third surgery as I was dealing with complications from the surgery. I was told women have a 1 in 100 risk of a second surgery and that a third surgery was unheard of by all the doctor’s in the practice. Several of which had 20-30+ years of experience. I am the one patient who has had 3 D&C’s for one miscarriage.
  • And as I heard from the doctor yesterday I was told 1 in 4 were the odds that the baby would have a neural tube defect. This mean that there was a 75% chance that everything would be okay. I prayed and prayed that everything would be okay…but now I am that 1 out of 4 that has to now figure out how we cope with the news that our baby will be born with spina bifida.

I admit yesterday I tried so hard to avoid the thoughts and refused to research the topic at all. It scares me so much. But now that I know the baby has spina bifida it is something we are still trying to comprehend. There are so many risks that we still are struggling to understand. It’s likely that the baby will have to have a surgery soon after birth to fix the open spine. They say this is something that can help prevent future issues. The baby will likely have developmental delays and how many other complications depend upon the severity of the condition. We will not know the severity of the baby’s spina bifida until after it is born. The baby could potentially suffer from paralysis, bladder and lower extremity issues. Many with spina bifida are able to walk on their own, some require braces, and some require wheelchairs. Many struggle with developmental and learning delays. Regardless of the severity, it all scares me. Even more so because there may be additional issues we are not aware of which only the results of the amniocentesis will tell us. Here I’ve dreamed of this perfect baby and I now fear how it’s imperfections may affect not just the baby but us all.

This pregnancy is officially high risk and now we will likely have more ultrasounds and other appointments to monitor the baby. We return to Winnie Palmer at the end of October for another ultrasound. We will likely undergo genetic counseling that will help us not only cope and prepare for the baby but better inform us of all the risks. And though we pray there are no added risks, if there are, we may be faced with the realization that there may be too many odds against this little one. But for now we are trying to dwell on the little bit of optimism and hopes for our baby, which we admit feels very bleak at the moment.

We did make the decision to tell Hope today. It has to be one of the hardest things for us to have to do. We’ve had to break the bad news before after I miscarried last year so it wasn’t completely new to us – but how do you tell your child that this baby we’ve all been praying for and watching grow now has such a birth defect that may totally alter not just the baby’s life but all of our lives forever? Jason and I have been so taken by this news today and have went through a series of emotions from feeling the shock and disbelief of it all to trying to figure out how in the world we are going to care for a child with such challenging complications. As we realized how hard it was for us both we decided to meet with his aunt Connie so that she could help us as we broke this tough news to our baby girl. Jaylen is still too young to understand but we knew keeping it from Hope would not be wise because we can’t even explain the emotional toll this has placed on us. If we waited any longer to tell her she’d have known something was wrong so we told her this evening and I could sense her shock but she remained strong and it was evident that she’s held back from expressing own emotions thus far. I sense she too is in such disbelief and trying to hold onto the optimism. We shared the ultrasound image with her and just as she was the many times before, she was such a proud big sister pointing out all the baby’s features. Something tells me she’s trying to be strong for me because I know my baby girl and I know hearing that her baby brother or sister will be born with concerns is going to weigh heavily on her in the months ahead. Regardless of the complications this baby may be faced with there is no question how much it is still loved by us all.

Right now I am still overwhelmed and now dealing with the cramping discomfort from the amniocentesis which hopefully will subside in the next day or so. We’re all still trying to find a way to accept this news and as we do we ask you all please respect the time we need. I recall last October as so many medical issues happened that our phones rang non-stop many days. Even yesterday as I shared the news on my blog and through facebook it only took a matter of minutes before Jason’s phone rang and rang and rang. We all appreciate the care and support so much but please allow us the time to cope with this very difficult news. But we are listening..so feel free to write an email or contact us through facebook, twitter or my blog. I promise you we will read every word. But we just can’t take the non-stop calls right now. Honestly, talking about this is incredibly difficult and almost always brings us both to tears. I know in time it may become easier for us to talk about but right now we’re still trying to wrap our head around exactly what we have ahead. I give you my word we will continue to update you all through my blog as we learn more about all the concerns with the baby.

And now I suppose we pray again, that regardless of what the future holds for this baby, that God continues to look out for our family. I swear I still struggle to understand why God keeps challenging us more than any family should be challenged. I will stop doubting God’s reasons and just believe that he has some greater plan, regardless of how little sense it makes at this very moment in time.

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September 28, 2010 - 8:53 pm

Kerianne - I am so very sorry to hear your news, Amanda. I feel like nothing I say will be enough. You and your baby will be in my prayers. I hope the amniocentesis brings you answers that help you prepare for your baby’s needs. It must be such a devastating day for you. You are so strong and have such an amazing family that surrounds you. I hope their love bring you comfort. xo

September 28, 2010 - 9:22 pm

Aida - My dear Amanda and family…My prayers are with you. God is with you during these difficult times.

September 28, 2010 - 9:41 pm

Lily - I am so sorry Amanda. I am struggling with what to say but I know I wanted to say something. I don’t know why you have had so many things thrown at you. It seems so unfair. I know I don’t know you on a personal level but as another mother my heart is just breaking. I am hoping for the best case scenario with this child but I know that whatever happens you will handle it with the grace and strength you have displayed in the past.

September 28, 2010 - 10:28 pm

Jaime Scott - I am really so sorry. I hate that you and your family are going through all of this. I will continue to lift you all up in prayer.

September 29, 2010 - 1:20 am

Lorena - I’m so sorry to hear this. There are things in life that we’ll never know why they happen. I know that when we have hard situations in life we want to believe even though we don’t see. The odds of things not coming out right are so high that we don’t know what to think anymore. God is the God of the impossible. Do not lose your faith. You are a strong woman who I admire a lot, I know great things are about to come into your life. You must keep strong for this turbulence you are going through, but believe that God is piloting that plane. When the oceans rise and thunders roar, you will soar with Him above the storm. Our Father is the king over the flood, and you will be still and know He is God. I will have you in my prayers. No matter the news from the doctors, don’t lose your faith.
Be not afraid, only believe -Mark 5:36. God bless you.

September 29, 2010 - 2:58 am

Renée - Dear Amanda, by chance I discovered your message today. I’m so sorry to learn about all that you’ve gone through. My first thought was, please get in touch with the Spina Bifida Association of America, http://www.sbaa.org. They have a wealth of information and may perhaps be able to calm some of your fears. I realise all will only become clear once the baby is born and at the moment you feel that the odds are against you. I guess my best “advice” at this time would be, please don’t try to be overwhelmed at this point by all the possible medical “issues”. You can still dream about all the positive things your new baby may bring to your family.
I’ll try and include a link to a photo that I took at our Annual Conference of a little girl with SB: http://www.reneejopp.nl/100611_ifsbhi/images/img_1727_sm.jpg
I realise there are many different outcomes possible, and I sincerely hope and wish you and your family will find all the strength and support that you need.

September 29, 2010 - 7:52 am

Shanna - I Love You! You are in my thoughts and prayers as you have been since the day I found out we were having another baby. You know I am not a big phone talker but it hurts not to be able to tell you how much I care about you and your family so you can hear it not just read it. I do believe that God only gives us as much as we can handle. You are one of the strongest women I know with a heart that is filled with love for all who you come in contact with. I did want you to know that my mom was born with spina bifida in the lower spine, and was able to lead a pretty normal life. I mean she had three kids one of which turned out perfect (me). Hope that made you laugh. Okay I am going to write in an email instead of on your blog, just in case others don’t get my sense of humour! I love you, I love Jason, I love Hope, I love Jaylen, and I love the precious one you are carrying. Lots of prayers!

Always,
Shanna

September 29, 2010 - 8:04 am

Volker - Amanda, your words are very difficult to read from an emotional stand point and I’m amazed by your strength for writing in such detail. As you and Jason try to get your arms around this life long challenge rest assured that you have a vast support group. What trimester are you in now? Have you spoken to a pediatric neurosurgeon yet? I have access to key opinion leaders so if and when you need the best doctor I would be honored to support you in that effort. Warmly,

September 29, 2010 - 8:20 am

Barbara Peterson - Our hearts are breaking for you all. But you have a strong family – and friends – to lean on, so do it. Lord knows I’ve leaned on you enough times. And you were always there. We love you and are praying His strength surrounds you. Love, Barbara and Bill

September 29, 2010 - 8:43 am

michelle - Oh Amanda – i am lost for words. Please know that I am thinking of you and your family, and sending love xx

September 29, 2010 - 9:13 am

Erica Reynoso Montalvo - Dear Mandy And Jason, Our hearts are with you. We pray for you and know that Heavenly Father is with you. When I was expecting Lili, I was told that she might be born with severe disabilities or die soon after birth. It was the only appt. I went to without Michael. I went into shock. I cried and cried and cried. And then I called Michael. He told me to cry for that day and then to have faith and that together we would receive this baby. To enjoy my pregnancy. And I did. Somehow his words comforted me in just the right way, and I enjoyed the pregnancy. When Lili was born, Mike was right by my side. And I cried tears of joy and gratitude when she was born, a beautiful healthy baby. The medical team did wisk her away to do some tests on her, and she has a couple of health issues that we track, but she has added joy and smiles and plenty of sass (I don’t know who she gets that from!) to our lives, to our family. And I am thankful for that experience. It humbled me, broke me, and made me better. I’ve know two ppl with SB who live rich, good lives, with their own unique challenges – as we all have – but good lives. You are not alone. I think you know that in your core. You will make it through this. You will be scared and sad and you will also continue to have beautiful moments, beautiful days. You are well loved. My best to you and your family always.

September 29, 2010 - 4:58 pm

kari - I came across your blog today. I am so sorry to hear of your news. I am a stranger to you, but I wanted you to know about a couple blogs out there
http://www.spinabifidakids.blogspot.com a great resource for parents
with lits of blogs of parents whose kids have SB
http://www.raisingtoby.blogspot.com my personal story of raising my son with SB
and
baby center has a great forum in their groups with all kinds of mommys whose babies have sb.
I am a christian and wanted to offer you some hope!
will be praying for you even though I dont know you
kari

September 29, 2010 - 7:55 pm

AnnOKeeffe - Tears came to me as I read this. Knowing what you went through last fall, I was hoping you would be spared from further pain.
Parenting is so hard and yet harder when there are additional needs.
Rest assured that you are not alone and that God has all of you in his hands. Often times we are faced with a difficult challenge and left wondering why. But fast forward to the future and it is then that we sometimes see the workings of the Almighty. And yet, sometimes the rewards are not revealed to us.
Either way, I hope that you find comfort, strength and peace in knowing God is with you.

I will keep you in my prayers.

September 29, 2010 - 8:53 pm

Suzanne Moll - Our hearts go out to you and you remain in our prayers. We know what a trying and difficult time this is. Having just come through a life altering diagnosis for our own son we also know how very little there is anyone can say or do, except for be there for you. I remember the whole world standing still for days and days, nothing else mattered or even existed except for our son and our little family. It is obvious that you and your family are very loved. Cameron and I are here for you as well. I’m touched by your courage (even though it may seem more like survival right now) and by your example of faith and love. You are an amazing and gifted woman and an incredible mother. Hang in there. The light, the blessings they do come. I have a favorite quote, “Life isn’t about avoiding the storms, it’s about learning to dance in the rain.” I’m learning to dance in the rain and to recognize the tender mercies in our daily lives. May you be lifted and surrounded in tender mercies.
Please let us know if we can do anything. Our love & prayers, Suzanne and Cameron

September 29, 2010 - 9:16 pm

Melinda Mumford - Amanda I pray that God guides and comforts you all in the days ahead.Have Faith in the fact that “Gods will be done” and we don’t understand but He does.You All are in my prayers.

October 2, 2010 - 11:43 am

jennifer harmon - you are in my prayers.

September 29, 2011 - 1:57 pm

Tara - Amanda, I am very sad to hear the news you have recieved, it’s hard for anyone to hear that there could be problems with their baby but, there is a but….. I am living proof that it may not be as bad as you first think.
I was born with spina bifida a mylomeningecele which is the worst form, I had a few operations in first months of being born. Ok i didnt walk or learn to be dry as quickly as others my age, infact doctors said I probably would never walk unaided or ever be continent. But to everyones disbeleif, I walk, talk and lead a perfectly normal life. I am now 25, buying my first house with my fiance, trying for a baby of our own, been to university and work with children with Special Educational needs.
I know this probably doesnt mean alot to you now as its your little bundle we are talking about but dont lose faith. I hope with all my heart that your story turns into a happy one like mine, my thoughts are with you and your family! x

October 19, 2014 - 8:47 pm

Hermes Birkin 30CM - By Sunday, others just wanted to get out of the house.

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