“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.
My angel, miracle, precious baby. He didn’t die. (to read more about the pregnancy story please visit
by Amanda Kern
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