Our Fetal Surgery Story:
On Tuesday, December 3, 2013 we went into our OB for our well-baby anatomy ultrasound. We were expecting to hear our baby was looking perfect and to continue with our monthly check-ups, etc. Instead, our Dr. informed us our baby had an Arnold Chiari Malformation of the brain with enlarged ventricles – it is almost always caused by an open neural tube defect. The Dr. looked and looked at our baby’s spine, but couldn’t find any opening. He concluded that there was probably an opening, but it was likely very small and very low, which is a good thing with this very serious diagnosis. He also told us it looked like our baby had a right clubbed foot, which is typical with this malformation. He wrote for some labs and scheduled us for a follow up with one of his partner’s in 2 weeks. Our baby was only the 3rd baby he had seen with this in the last 10 years, and the other two had chosen to terminate their pregnancy for medical reasons, so he wasn’t completely confident in managing our case (this was a high-risk OB, not our regular OB).
We were devastated and in shock for several days before we decided to call a high-risk OB that is in our church and ask him for advice. He told us not to wait around for the second opinion here and gave us a list of 6 specialty programs in the US to contact that deal with this diagnosis. After looking at the programs, we decided to start with the one at the Children’s Hopsital of Colorado in Denver. We called the following Monday afternoon and they immediately scheduled us for a full day of tests and consultations for that Friday.
On Thursday, December 12, Nate and I flew to Denver. Friday (the 13th) we had a fetal MRI, a fetal echocardiogram, an ultrasound, and a meeting with a geneticist. Immediately following our tests, a large team of doctors met to discuss our case. After about 40 minutes of discussion, we were invited in to meet with the team. Our team included the head of the program and pediatric surgeon Dr. Timothy Cromblehome, a maternal fetal specialist, a neonatologist, a pediatric neurosurgeon, a pediatric neurologist, a pediatrician, an OB/GYN, a geneticist, and a radiologist. Also in the initial meeting were a fetal cardiologist and an orthopedic surgeon, however Calvin’s heart was perfect and he (miraculously) did not have a clubbed foot after all, so they were not there anymore when we arrived.
Our official diagnosis was Arnold Chiari II Malformation with hindbrain herniation that was stage 3, with an open neural tube defect ranging from L2 to S5. So the hole was a lot bigger than we had anticipated, but he didn’t have a clubbed foot, so we were grateful for that.
They decided that Calvin and I met the criteria for an inter-uterine surgery on the spine. On Friday, December 20, 2013, less than 3 weeks after our diagnosis and at 25 weeks gestation, they made horizontal incision on my skin from hipbone to hipbone, and then a vertical incision on my uterus. They then exposed Calvin’s back and corrected the open neural tube defect by placing a patch over the hole. He was out for approximately 38 minutes. Then they replaced the amniotic fluid that was lost with normal saline, and stitched everything back up. Everything went well.
I was on magnesium (a miserable medication to stop contractions) for 48 hours after the surgery and was released from the hospital to go across the street to the Ronald McDonald House on Christmas Day. On December 27 I went back for a post-op check-up and was re-admitted for low amniotic fluid. I battled low fluid for the next 10 weeks and was in and out of the hospital until my water broke on February 10, 2014. I was on magnesium for 24 hours and antibiotics for 1 week, and we kept Calvin inside for 2 more weeks. He was born on February 24, 2014 at 34 weeks.
We loved, loved, LOVED the Maternal Fetal Unit at Children’s Hospital of Colorado and would recommend it to anyone considering fetal surgery. Fetal surgery is extremely risky and not easy for anyone involved, and it is definitely not for everyone. However, even with all of our complications we are so glad we chose that route for Calvin. If you are a mom or dad considering fetal surgery for your baby, please feel free to contact me with any and all questions!
Fetal Surgery-related Posts:
- First letter to friends and family
- The day before surgery
- Fetal Surgery
- A Husband’s Perspective
- Post-surgery – and the mag!! Yuck!
- The AMAZING team in Denver!
- Recovering from Fetal Surgery
- Christmas in the Hospital
- Re-admitted – Low Fluid!
- Update from the Hospital
- Life in the Hospital 1
- Still in the hospital…
- Freedom! AKA the Ronald McDonald House
- 28 Weeks
- Update from the Ronald McDonald House
- My Scar! (you KNOW you want to see it!)
- Having FS? Pillows will save your LIFE!
- 32 Weeks! Bow-chicka-wow-wow!
- My Water Broke – PPROM
- A Birthday in the Hospital
- The Fetal Surgery Suite! (super secret tour)
- Hospital Life 2
- The last day of pregnancy