Musings of a Marfan Mom

A Change in Plans

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One lesson I’ve learned from having Marfan syndrome is to expect the unexpected. I also think having Marfan is why I haven’t really been nervous at all about delivering the baby. I’ve spent a lot of time in hospitals and though I’d never call the experiences “fun,” I am comfortable there. I know what to expect: the smells, the sounds, the general flow of the environment.

So, I wasn’t totally taken aback when I found out on Thur. that there was a hitch in our well-thought-out delivery plans (though I was mad). Because I’m a high-risk pregnancy, I have an obstetrics team comprised of my OB, my cardiologist, his nurse practitioner, and 3 anesthesiologists (so whoever is on call when I come in to deliver will be familiar with me). They meet once a month to discuss my case. Well, Thur. was my first time meeting one of the anesthesiologists face to face. I was surprised and angry to learn that he had NO idea I have a rare spinal condition called dural ectasia. It’s not found outside of people with Marfan and Loeys-Dietz syndromes. Really, I have no clue what my team has been doing in those meetings if that didn’t come up, b/c it’s been my #1 concern with the pregnancy as far as complications for me go. In any case, the anesthesiologist told me he and his resident would stay up late researching my condition and talk to my specialist at Hopkins, and that as of now he didn’t feel comfortable doing an epidural or spinal catheter on me because of the potential I’d have for permanent disability due to my dural ectasia.

[Future doctors, take note: to me, this is the mark of a great doctor. Not all doctors can admit when they don’t know something/don’t feel comfortable doing a procedure, but if you can, a patient will trust you so much more.]

After I talked with my Hopkins doctor and my OB, prayed a lot, and my OB consulted with many other doctors, we decided it is best to deviate from my birth plan. I am going to be having a c-section under general anesthesia to deliver Baby Z. The date for that will be set tomorrow at my OB appointment.

I feel really at peace about the decision. In some ways, it’s easier for me to wrap my head around this than going through labor because I know what general anesthesia is like and how I react to it, as well as what the recovery process from surgery tends to be like. I would be lying if I said I wasn’t a little sad though. I think it will be kind of weird to not be “there” when my baby is born (and I assume Mark won’t be allowed in the OR, so he won’t be there either). It will be an hour or two before I can meet him/her. And just so everyone knows, Mark isn’t allowed to call/text/email anyone to announce the birth till I see the baby because I don’t want to be the last one to find out the gender. :-) However, in the grand scheme of things an hour or two away from Baby Z is not a big deal and it’s more important that we’re all safe so we can start our new life together as a family of 3!

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  1. You are so right, how they get here is not so important as that they get here safe and sound. After two c-sections I can say- they are the way to go. I have had good experience both times. And although I was awake for them its major surgery and I was so shaky a sick from all the meds and nerves that I couldn’t hold my baby for a few hours anyway.

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  2. I am so sorry about the changes. This will probably sound cheezy, but isn’t it amazing that we live in a time that they CAN safely do a c-section with general anesthesia?? I tell you what – after my BAD experience when I had Savanna with the botched epidural and the 5 day spinal headache, I think I would have preferred a c-section under general! Although I saw her as soon as she was born, I could not enjoy her for a week because I couldn’t even sit up without having to puke. Funny fact – did you know bears have their babies while they are hibernating and the baby nurses off of its sleeping mother and the mom doesn’t actually ‘meet’ their cubs till they get out of hibernating in the spring! ha ha – just thought that would give you a laugh. Best of luck to you and please let me know if I can do ANYTHING for you!

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  3. Maya, I’m sorry that you had to change your plans. That will be hard to not be “there” for the birth, but I think it’s great that everything will be extra safe. I hope it works out well for you. Let me know what your date will be and what I can do to help you. Good luck!

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