Thursday, May 11, 2017

Our Fetal Surgery Saga (Part 1)

I am going to start by saying if your a mom looking for a story of someone who actually had fetal surgery this is not it. This however a story about how we got to that decision.

Now that I have gotten that out of the way lets get to the story. I realize some of you have no idea what I am even referring to and that is ok; if you bear with me I promise I will explain it all. I left off last time with that agonizing 5 day wait of waiting for some clarity. Finally the day came when we got to meet with our MFM (maternal fetal medicine) doctor, or high risk pregnancy doctor. My wheels had been spinning the last five days trying to figure out all the possible things I would hear today. Honestly I still had that hope that they would tell me it was a mistake the tech took the images wrong and everything was just fine, I mean who wouldn't hold on to that dream?

The doctor took us back and began scanning. It didn't take but about 2 minutes for her to stop and say, "see that? There it is." She was referencing the "bubble" along his spine. This "bubble" is really the area on his back where the spine didn't close up all the way and where the contents of his spinal column stick out and they call it his "bubble" because it looks just like a bubble on his back on ultrasound. There it was you guys, it was confirmed little K did indeed have spina bifida. My heart sank, that last little bit of hope I held onto was gone. I was crushed because now my mind went from maybe it's nothing severe to what does this really mean now? Will he be ok? What complications can I expect? What was his lesion level? Will he be able to walk? The questions were endless and honestly I didn't know what to think or where to start.

One of the first questions our MFM asked was what we thought about fetal surgery. Fetal what? I had no clue what she was talking about. In it's most basic explanation it is a surgery where they open me up to get access to the fetus and close the opening in the babies back then sew me back up and continue with the pregnancy. It is a very risky procedure with the biggest risk being preterm birth. My gut reaction was NO are you kidding me? cut me open and perform high risk surgery on my baby? Oh and did I mention after surgery you are basically on permanent bed rest? Oh and the surgery has to be done by like 26 weeks so you have 3 MONTHS of bed rest? Yeah, there was no way I could do it. I had a 1.5 year old at home to worry about. I had made my decision no fetal surgery just no.

So your thinking that story is pretty boring right? Well it would be if that was the end, but like most stories there is always a twist.

After the initial appointment my husband and I went home and began (like any good student would) reading up on fetal surgery. We read peoples blogs, we read journal articles, we read case studies I mean come on we are both dentists we know how to do our research of medical studies. Yes I read the numbers you know those fancy statistic type (sample sizes, standard deviations, confidence intervals and all). The more we read the more the research pointed to fetal surgery as being a great thing. All the studies and results were so promising! I mean if we really wanted to do everything for our child to give him the best quality of life we decided we had to at least look into the option of fetal surgery. But by this time I was almost 23 weeks pregnant and the range for fetal surgery is very small it has to be done before 26 weeks. So we called the MFM and told her we wanted to investigate Fetal surgery. I needed to get an amniocentesis done to be even considered so that was our first step in our journey. I got the amnio done and then the real journey began...yup I am just getting started.

Because we were stationed in Biloxi, MS at the time there were no hospitals in our area that routinely performed fetal surgery. There was one hospital that had done a handful of cases in New Orleans, but I didn't feel comfortable with those numbers. I wanted to go to a hospital that has a proven track record. There are 4 hospitals that have been doing this surgery since the very inception of the idea, these 4 hospitals where the ones that have been doing these surgeries since the MOMS trial began.

*In case your really interested in the MOMS trial study here is a little more information MOMS*

I mean have a medical background I knew the odds were going to be better if I went to a place with a proven track record. I will note that many more hospitals now are doing fetal surgery and in much greater volumes so I do believe the options will only continue to grow, which is amazing! But anyway at the time this is how I felt and that is what my gut was telling me was right. Being active duty military at the time I was so fortunate enough that they were willing to basically give me free pick of where I wanted to be evaluated at since there wasn't really an option close by. In the end I decided on Children's Hospital of Philadelphia because after reading all the research they seemed to really be one of the pioneers of this surgery and I wanted the best of the best so that is where I wanted to be.

Now the real adventure begins!
To Be Continued...

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