Our Fetal Surgery Anniversary: A Celebration of Being Born Twice

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Today marks a very important milestone for our family. It is our 6th fetal surgery anniversary. Exactly 6 years ago today, my son was operated on while still in my womb. At only 22 weeks and 2 days gestation, his little back (and bum) were exposed to this world for the very first time. A team of doctors (or as I like to call them miracle workers) at The Children’s Hospital of Philadelphia repaired the opening on his back caused by spina bifida and tucked him right back where he belonged. The purpose of the prenatal surgery was to seal off the nerves in the back and to prevent any further deterioration of those nerves from taking place.

Prior to being candidates for fetal surgery, I had heard of the procedure, but I honestly didn’t bother to pay it much mind. The whole idea of operating on a baby before his actual birth seemed a little too sci-fi and “risky” to me. If I’m being completely transparent, the idea of what Miles and I went through still completely blows my mind if I sit and think about it long enough.

But today, in honor of Miles’ 6th “Butt Day” (as we fondly refer to it in our house because his butt saw this world a full three months before the rest of him did), I want to share just a little prenatal surgery knowledge with all of you. Who knows? Maybe this post may even find an expecting mother when she needs it most.

So here are the Top 5 Things I Wish the General Population Knew About Fetal Surgery:

1. Many hospitals are now offering different kinds of fetal surgery.

When we were designated as candidates for fetal surgery, the only type available to us is what they call “open fetal surgery”. This means that they actually fully open the mother to get to the child. In recent years, however, several hospitals have started to perform certain fetal surgeries laparoscopically. Also, spina bifida is not the only diagnosis that warrants fetal surgery. Fetal heart conditions and Twin to Twin Transfusion Syndrome are a couple of numerous other conditions that can be treated before birth.

Miles and Dr. Adzick, The Founder and Director of The Center for Fetal Diagnosis and Treatment at CHOP and our head surgeon

                           

Miles and our nurse coordinator. She will forever hold a special place in our hearts.

2. If you opt for open surgery, plan for bedrest!

The #1 rule for mothers who have open fetal surgery is to REST. I legitimately laid on my left side most hours of the day. If I did need to go anywhere, it was in a wheelchair. Fetal surgery comes along with a very real, very significant risk of premature labor. Resting helps try to combat that risk. 

3. Fetal surgery is NOT a cure (at least as far as spina bifida is concerned).

Many people thought that because Miles was “fixed” prior to being born that he would also be “cured” of what ailed him. Though we personally saw GREAT benefits from having his lesion repaired prior to being born, he still faces some daily spina bifida related struggles. I’d do the surgery again in a heartbeat, but it didn’t “save” my son from having a birth defect.

Miles a few days after the 2nd time he was born at 35 weeks, 2 days gestation

4. Fetal surgery is not for everyone.

And I don’t just mean that it’s not for the faint of heart. There are several contributing factors that help determine whether or not a mother and child are candidates for fetal surgery. Many mothers are turned away from fetal surgery centers (and given support for postnatal repairs) because prenatal repair isn’t in the child’s best interest. Some parents opt to do surgery after the baby is born because of their individual circumstances, and their kids are every bit as wonderful and amazing as those who opt for fetal surgery.

5. Mothers who have fetal repair never have to feel alone.

I’ve made some wonderful friends (some who are more like family) through spina bifida parenting groups. Many of the moms also have children who had fetal repair, so we often share advice and experiences with fetal surgery “newbies”. Our nurse coordinator from CHOP turned into a great family friend, and we can count on the doctors from their Center for Fetal Diagnosis and Treatment Center to help guide us when it comes to Miles’ medical care. 

Miles ended up hanging on and “marinating” in utero for exactly 3 months post fetal surgery. He was born at 35 weeks, 2 days and only endured a 13 day NICU stay. Today he walks, runs, and jumps. He is also very joyful, intelligent, and articulate. His doctors, my husband, and I attribute much of his success to his fetal repair. And because of this, my son will always have 2 “birthdays”…his fetal surgery anniversary and the day he came out and stayed out. Because let’s face it, what we went through can be classified as a medical miracle…and a reason to celebrate an awesome kid twice in 1 year.

Today Miles runs, jumps, climbs, and even walks our family dog.

 

 We attribute many of his daily triumphs to his successful fetal surgery.

 

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Liz, who grew up in New Castle, PA, is the only female resident of her family’s Cranberry Township home. This boy mom actually enjoys being severely outnumbered by her husband Adam, their 5 year old Miles, and even her male dog and cat. She frequently claims that there are definite perks to being the “lady of the house”. Liz studied Secondary Education/English at Clarion University where she also earned her Masters of Curriculum and Instruction. She puts her degrees to good use as a high school English teacher. Though it’s sometimes difficult to juggle her career and motherhood, she can’t imagine her life without either role. When Liz isn’t teaching or relaxing with her guys at home, she can typically be found reading, working out, adding items to her Amazon Prime wishlist, listening to 90’s hip hop, cooking, or planning her family’s next vacation.