Over four years ago when we considered giving up on our son Chance’s life, I wrote openly about the emotions and decisions we were faced with. In part it helped me cope but I also did so for support. Instead, majority of the responses lead an attack that helped me realize just how touchy of a subject this is. So I write this with the hopes to reflect and shed light on our past as I pray this post will someday bring other mothers who are considering or have aborted a baby some hope and a better understanding of spina bifida. Spina bifida is the most common permanently disabling birth defect that comes with many complications – but rather than sharing all of it’s potential complications – you deserve support. You need to know it’s okay to have fears – and that raising a child with spina bifida is possible because though you may be considering giving up, you don’t want to give up.
Yes, I admit…I feel like the worst mother in the world for considering giving up on my child’s life. If you are in this position, please know that you are not alone. I have been there and I shared my open thoughts during Chance’s pregnancy on my blog. Sharing my thoughts openly lead quite a few people to think less of me because as I learned all of the complications that my son would be born with – I was scared and wished I could give up and start over. I was frightened of the unknown and wished for a healthy, perfect newborn baby. Little did I realize then that my baby would be born perfectly made, even with the birth defect spina bifida. Sometimes it takes time to understand that we can’t really define “perfection” until we experience it first hand.
Any mother who faces a spina bifida diagnosis (or any adverse diagnosis for that matter) should not be scrutinized for having fears, worries or wishing she could give up because to be honest…raising a child with spina bifida has not always been “amazing”. I had my moments when I was pregnant where I wondered “how am I going to do this? how are we going to raise a child with spina bifida?” I was worried how we would be able to care for a child with significant needs. So let me reflect as I pray to help those mothers who have aborted or who may be considering giving up – because though there is so much hope – I DO understand how easy it is to want to give up when all you learn about spina bifida are the things that are “wrong” and the medical challenges a person may face.
I learned our son Chance would be born with spina bifida when I was 17 weeks pregnant. I feel blessed that during the diagnosis my doctors were so supportive and never once encouraged termination, however, I was informed it was an option. When I first heard the words “spina bifida” from my doctor she told me “do not google spina bifida” and went to say that anything I’d find online would scare me. Instantly I was worried how much might be wrong. The very next day we received the official ultrasound diagnosis showing all of the key indicators for spina bifida – the defect in his spine, the banana sign and the lemon shaped head inutero. I knew something was wrong with my baby but I didn’t understand just how “bad” his spina bifida might be. And I desperately wanted to know anything and everything I could learn about spina bifida so that we knew just how much we were up against. I remember wondering “what would his life be like?” We left the doctor knowing that we had some tough days ahead that were filled with a lot of tears as we were left with trying to understand his condition, something even the doctors couldn’t predict. Every doctor we spoke with said that we wouldn’t know just how significant the challenges would be until he was born.
Over the course of the next few weeks after receiving the diagnosis I cried. I prayed. I read anything and everything I could find about spina bifida and hydrocephalus. I learned that googling the topic would lead to horrifying search results. No wonder women wish to give up when most of what is found on google, especially google images, are horrifying images of babies before they had their back closure surgery and of babies with hydrocephalus with enormous heads that looked like something out of a sci-fi movie. No one should ever have to see such horrifying images and this is not what the world should have to relate spina bifida or hydrocephalus to – because if a spina bifida patient gets adequate medical care they CAN lead a long and healthy life and go on to fulfill great roles in society.
Although I don’t think I need to justify all of my reasoning behind our consideration to terminate. I do now think it’s time to write openly – to help future mothers who may go through these challenges but to also help the many families who have followed Chance since before he was born. After the diagnosis I was avoided like the plague. Our family and friends were in shock – and as I tried to talk about all we were coping with most people had a tough time discussing it because they not only were heartbroken…but so many said “I don’t know what I’d do if you were in your position”. Or I had some said “I don’t think you want to know what I’d do.” Yes, I wanted to know….because we were at a loss for what to do. No matter what choice we decided we were guaranteed it would be challenging and would bring heartache. You see, though we had begun to learn so many families felt their children with spina bifida were blessings – we were frightened of the challenges and we did not want our child to experience pain or suffering – and we were afraid of he unknown. We didn’t know how amazing his life could be, until he was born.
One of my dearest and best friends who I’ve known for over 15 years called me a few days after the diagnosis. She was the friend that was there through so much of our heartache (we experienced 3 miscarriages over the years) and I could always rely on her to give me her honest, yet caring, opinions. She shared with me that her own mother was born with spina bifida. She asked me if I wished for her opinions – and of course, of all the people we can trust and wish to share their thoughts with us…our friends can help us. She said if she were in my same position that she would terminate. Instantly I thought to myself, “how on earth? your own mother had spina bifida?” She shared that she grew up watching her own mother experience the challenges of spina bifida and shared some of the things she experienced. She went on to say that she had seen our family experience enough heartache and that she knows having a child with spina bifida would be hard and that she just didn’t want me to hurt anymore. It was the first time I truly thought “I can’t do this”. For the next few weeks we seriously considered termination. I read countless resources, even research studies from years past that showed similar thoughts – that teens living with spina bifida would suggest their mother abort if she was to become pregnant with another baby with spina bifida. Yes, it’s sad that research projects like that even existed. Even after meeting with a genetics counselor I was informed that the termination rate is suspected to be 50-80% for babies with spina bifida. All I could think was…there’s a reason why so many people are giving up, but really, why? Why are so many families giving up? Even if they don’t give up, why are women (like me) even considering it?
As I tried to understand my options and so many refused to share their opinions I reached out to the spina bifida community but also to our friends and family and asked for their opinions. I learned really fast that asking for opinions about “options” are not the best thing to do, especially with those who have babies with spina bifida. The survey of my options was nearly a dead tie – and if I can be honest, after talking a lot more with my friends and family through emails and phone – so many were accepting and even admitted if it was them…they didn’t know how I’d continue the pregnancy and that I should terminate. Some of our family who even have a connection to the medical community admitted terminating their own pregnancies for personal or medical reasons and some said they didn’t know how they’d be able to care for such significant medical needs such as the potential need to catheterize a child. It was sad, but it helped me understand that our family understood our fears. So I have no doubts these numbers in this poll are so evenly divided because the moment I shared it – it was seen by most mothers online who had a child with spina bifida. I felt attacked – as they all desperately wanted to help me see that spina bifida was a condition that was manageable – and that my child would amaze me. But when you’re pregnant I admit – its so hard to see past the worries and challenges that we learn about the birth defect to see the optimism in the diagnosis. Sadly majority of people who saw this survey felt it was my “justification” to terminate – when really I was scared to death of the diagnosis my son was faced with and prayed for others to share their opinions of what they’d do if they were in the same situation.
After sharing that survey I had several mothers who had aborted their baby with spina bifida message me. Sadly they were all told such “bleak” outcomes and many were even advised to terminate. Now four years later, I’ve heard from and met so many families who have nearly the same story. They either were advised to terminate, were told only the worst outcomes, or just could not find the hope to continue their pregnancy. It’s sad that there’s not support for those who experience a prenatal diagnosis of spina bifida. The fact that this is still happening in 2015 is evidence that there are still big challenges with the spina bifida diagnosis.
I am not one to question a person’s beliefs regarding abortion – nor is that the point of writing this. But I can tell you I understand the strong emotions that arise when you feel your baby may be born with an adverse condition like spina bifida. I don’t think most really “get” what goes through a mother’s mind as she may be considering her “options” after the diagnosis. It’s sad that when a woman is vulnerable and wishing for support – that if she speaks openly about this topic of termination that she’s instantly perceived as a monster. If you are a mother considering giving up, I assure you – you are not a monster for wishing to give up when you fear all of the things “wrong” with your child…but yes, I too pray you will find the optimism like I did. Here’s one of many cruel comments I received in 2010 after I shared my thoughts – ironically this comment was posted to one of my photo sessions not related to spina bifida…so really I had quite a few people who were angry at me. In fact there were people in this world that hated me for sharing my fears so openly.
I do remember so clearly the day we visited Chance’s neurosurgeon for the first time. My mind had already been circling with thoughts about our options and as I struggled to understand so much I spent part of the day thinking through a mindmap that will help you see the exact thoughts that crossed my mind the day that we nearly gave up. We were told the neurosurgeon is the one that brings all families hope and that they can help a family understand the specific challenges a baby might be experiencing based on the ultrasound and MRI images. So if you are out there wishing to bash a mother for wanting to give up – I hope this helps you see a glimpse into the feelings many mothers experience when they face a spina bifida diagnosis. I not only feared how many medical challenges Chance would face and how significant they would be, I feared the costs of raising a child with spina bifida, and how it would impact my family and my career. I know that if a woman considers termination – it is not because she is a cruel heartless monster. Every thought on these mindmaps was written through tears – as I tried to deal with the internal battle of whether or not I would continue our pregnancy with Chance. It hurt so bad knowing that I could easily understand all the reasons I wanted to give up, but never once did I want to give up on my child’s life.
We sat down with Chance’s pediatric neurosurgeon and all she had was optimism. She had cared for countless spina bifida patients and said there is so much hope and as we struggled for answers regarding his specific situation – she ordered a fetal MRI so she could get the most accurate look at his “defect” – this image reassured us that we were in a “best case scenario” that his opening was small and low on his back, leaving him with potential for a good outcome – but we were told we would not know how much he would be affected until he was born.
Do you want to know why so many women are terminating or considering terminating a child with spina bifida? All they can find online is horrifying and what they are provided by medical teams is outdated and does not bring hope. Here’s what our doctors and genetics counselor provided us – most of these handouts were decades old – with the oldest one dating back to the 1980′s.
No mother should be receiving 30+ year old resources for support. Some of these resources said our child’s life would be very challenging and that we wouldn’t be able to do normal things, like travel. It’s unfortunate. Sure there may be some medical information in this material – but all it made me fear was “there’s too much wrong with my child”. Seriously, if you are sitting there worrying that you can’t do this because you’ve just gotten the diagnosis I “get” it – because us parents have received nothing more than “medical jargon” that only scares a parent more. Yes, I pray the doctors please tell us what is “wrong” to help you understand spina bifida better – but I pray those in the medical community who have contact with newly diagnosed patients can help humanize the diagnosis. Often times those that have the knowledge and ability to can’t bring hope until it’s too late. It’s time to improve the resources for expecting parents so that their diagnosis is more humane – so that as they learn of all the challenges their child may have – they are able to see the hope.
If you are considering terminating your pregnancy due to a spina bifida diagnosis I have a few words of advice that may help you. I can’t make your decision for you, it’s obvious what I chose – I hope you too will find the hope to be reassured that raising a child with spina bifida is possible…and honestly, it can be a life changing and amazing experience that you will come to appreciate – so here goes, I pray this helps you if you are torn with these “options” you were given:
- Avoid googling the topic, especially google images – it will only scare you and I can tell you firsthand that most of what you can find on google is NOT a real outlook on what life with spina bifida is like.
- Read the resources on the spina bifida association’s web site for newly diagnosed families. SBAA is one of the best resources to learn accurate information about spina bifida.
- Contact a pediatric neurosurgeon immediately and schedule a consult. Seriously, looking back now – I wished I had called her the same day as the diagnosis so that I could have spared myself so much of this heartache. She helped me understand spina bifida and what we had ahead so much better.
- Contact your local spina bifida clinic. Typically the clinics are lead by nurses who care for many children with spina bifida, in fact – that’s their job – to care only for children with spina bifida and to help manage their care. They have become like family to us. They can help you understand what spina bifida is better.
- Contact your local spina bifida association chapter or support group closest to you. This will help connect you with other families who are affected by spina bifida and to be honest, they are the best resource you will have besides your child’s medical team. Our spina bifida community has become like family to us as well – they will be there when the most challenging things happen, things that often times your own friends and family may never understand.
- Connect with a spina bifida group online – facebook has many (search for united by spina bifida, take that spina bifida, Expecting & Considering Fetal surgery for spina bifida, or the sba facebook parents group). As you have questions parents and adults affected by spina bifida are helpful in answering questions.
- Go follow the new Redefining Spina Bifida facebook page. Several photographers have teamed up with me to share images of individuals affected by spina bifida – praying that can bring you hope. But also praying that it will also help you see what life with spina bifida is really like.
I don’t want to sugar coat a spina bifida diagnosis. I won’t lie, raising a child with spina bifida is not easy. In fact, we’ve faced a great deal of adversity. In nearly four years of life Chance has endured 12 surgeries, has spent six weeks of his life in the hospital and has been in hundreds of doctors appointments, tests, and therapies. Most days we don’t even think about spina bifida – because he really is like any other child his age. He’s smart, adorable, strong, and has the best smile. But he does have challenges that have no “cure” – because you see when you opt to continue with “life” you are agreeing to a commitment that you will be there for your child for “life”, and really how is that any different than being there for any child (with or without spina bifida) for life? Most days he amazes me and makes me smile – but there are still days that I find myself overwhelmed and even asking myself “how are we going to do this?” But I will tell you that choosing life and giving our son a “chance” was the best decision for our family and one I am glad we made. He’s taught me so much about life – surely that chances are worth taking – but he’s also redefined my perception of perfection.
For those of you who may consider giving up on your child due to a spina bifida diagnosis, I can assure you of a few things. You are NOT a monster for having fears that make you wish to give up. You CAN do this – raising a child with spina bifida IS possible. You know what’s amazing when you face such a tough decision – it WILL change your life…no matter which decision you make. For me, it has been so tough AND so amazing. The mother who was once perceived as a monster by so many people who followed my thoughts on nearly giving up now spends a considerable amount of time volunteering to improve and transform the world’s perception of spina bifida. No, we can’t take away the challenges our kids may face in life – but we can help so many mothers see the light and help them see that their child’s life IS worth it. We can help doctors better understand spina bifida so that they help families make informed decisions. If you are considering giving up on your child diagnosed with spina bifida I understand, because I was you just over four years ago. If only I could go back in time and know what I know now. Having a child with spina bifida isn’t the end of the world – in fact, it will change your world for the better regardless of how many challenges you child may endure. I hope somehow this has reminded you just how amazing “chances” can turn out to be.
by Amanda Kern
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