Fetoscopic Surgery: The Operation (part 2)

I am a little delayed in sharing this experience, but I tried to do my best to keep our family Instagram account up to date in real-time. So feel free to go check out our story there in my IGTV updates and Texas highlights.

As you read in part 1, the process leading up to the surgery was a lot of information gathering and anxiety, which went away as soon as surgery day came. I felt completely prepared for the surgery itself. I had a good understanding of the procedure, the risks, the benefits, the process etc.

If you are invested in learning more about fetoscopic surgery, the Texas Children's Fetal Center has an easy-to-understand and succinct description of the fetoscopic repair process, which you can read more here. But if you don't feel like reading, here is a brief description of the surgery as they describe it:

Fetoscopic repair surgery is typically performed between 19 and 26 weeks of gestation (we had ours at 25 weeks and 5 days, on February 10th, 2021). The mother is given general anesthesia and medication to prevent contractions. The fetus receives pain medication prior to the repair.

During the procedure, the mother’s abdomen is opened to expose the uterus and the uterus is lifted out. Two 4-millimeter incisions are made in the uterus and fetoscopic ports are inserted. Some amniotic fluid is then removed and replaced with carbon dioxide gas to improve visualization.

A small scope with a camera on the end and tiny surgical instruments are inserted into the uterus through the ports. Guided by ultrasound, the surgeon closes the defect, protecting the fetal spinal column and nerves from infection and injury for the remainder of the pregnancy. The uterus is returned to the abdomen, the abdominal incision is closed and gestation resumes.

Here is an awesome illustration of the repair process as shared by Texas Children's Hospital:

Usually, the surgery is supposed to take about 4 hours, however, my surgery took about 7-8 hours as they ran into some issues with my placenta. Apparently, the way my placenta was positioned (posterior) they needed to flip my uterus in an unnatural way that my body was not cooperating with (which they hilariously called my uterus "floppy"), so they had to invert me so my body was more diagonal than flat and my feet were above my head so that my uterus would naturally find a good position and they were able to access the lesion on McLane's back better. This resulted in a longer repair process and a bit of a longer recovery as I then had fluid on my lungs as a result of being under general anesthesia for so long.

I don't remember much post-surgery other than a lightning storm, eating only popsicles, jello, and drinking chicken broth, as well as how hard it is to pee 1. after a catheter and 2. when nurses are watching you.

As with any surgery, there are risks, and I had anxiety over these risks leading up to the surgery. I questioned whether we were doing the right thing, or if we were somehow playing God by interfering and having this procedure done. I also had a lot of anxiety around the fact that not many people have had this opportunity. I felt like we were (and we are) insanely privileged, as this surgery has not been around very long and you really needed to have an amazing village of support surrounding you (whether that was through community donations, family support, ability to take time off, etc).

However, the one thing I kept returning to was how perfectly everything was lining up for us. Everything was falling together so perfectly, I couldn't ignore that. You see, I had texted my old UW softball teammates and a few of them had said "Have you reached out to Kristi Kingma [UW basketball 2008-2013]? She is going through this same thing with her little guy." and that very same night, my brother told me an old friend from high school was going through this same thing with his son and that I should reach out to him. His name was Shaddye and his wife is named Kristi...WHAT ARE THE ODDS. So I reached out to the Melu family, and my life would forever change.

They told me all about how they had relocated to Houston and were at Texas Children's Hospital recovering from fetoscopic surgery. This wasn't an option presented to me so I asked Kristi to give me more details. She explained how it was different than open fetal surgery and that Dr. Whitehead and Dr. Belfort at TCH had pioneered this technique. She gave me all the ins and outs and answered all of my questions. The craziest part of this was the timing of everything. She had her surgery in November, and her son was born in January. We found out about our little guy's spina bifida in January, about a week before her son was born. She mentioned our case to her team of doctors (who would eventually be my team of doctors) and they told her to have me start the evaluation process right away.

Kristi & Shaddye's baby boy was in the NICU but they had leased a short-term rental in Sugar Land, TX, about 30 minutes from the hospital. When we decided to go through with the surgery, the Melu's had talked to the family they were renting from and put us in touch with them. The timing could not have been more perfect, since they were being released from the NICU one week before we were scheduled for surgery. Literally, they flew out of Texas the day before we flew in. The family we rented the house from was actually looking to sell it but allowed us to use it as a short-term rental February-April, and we are forever grateful to them for that! It was seriously so perfect for us and all of the people we were going to have (all the grandparents, the twins, and us).

It was so crazy how everything lined up so perfectly. Almost too crazy. I kept waiting for things to fall apart since they were all going so well. Kristi and I bonded over this experience and it's safe to say we have formed a unique friendship and we cannot wait for our little warrior boys to meet one day!

Thank you for taking the time to read all of this! The next part I want to share is the recovery process, which I was not prepared for at all, was the grind of recovering from a prenatal surgery while still growing a human. Be on the lookout for part 3 where I will share more about my recovery experience!