Friends and family,
We are amazed and feel so blessed at the outpouring of love and support we have received in the last week. We are so grateful for the many prayers and well-wishes that have been sent our way. They have lifted us and helped us through this trying time.
We realize many of you are probably uncertain of the details surrounding our little guy’s diagnosis and our plans, so we wanted to update everyone.
Last Tuesday, when Nate returned home from his month-long rotation in Oklahoma, 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 ward 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 Monday afternoon and they immediately scheduled us for a full day of tests and consultations for that Friday.
Thursday night, Nate and I flew to Denver. Friday 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. On our team is the head of the program 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 our baby’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 diagnosis is Arnold Chiari II Malformation with hindbrain herniation that is stage 3, with an open neural tube defect ranging from L2 to S2. So the hole is a lot bigger than we had anticipated, but he doesn’t have a clubbed foot, so we are grateful for that.
They decided that our baby and I meet the criteria for an inter-uterine surgery on the spine. They will make a horizontal incision on my skin from hipbone to hipbone, and then a vertical incision on my uterus. They will then expose our baby’s back and correct the open neural tube defect. Then they will replace any amniotic fluid that was lost, stitch everything back up, and have me on strict bed rest until it is time for the baby to come, which will hopefully be at 34-37 weeks. It is very possible that he could come earlier, as one of the risks is premature delivery. Barring anything major happening between now and Friday, we have decided to go ahead with the surgery. It will likely be this Friday.
We feel so blessed that things were able to come together so quickly, as this surgery is only available until 26 weeks, which is December 26 (our 5 year anniversary). Our doctors are amazing, the program is so organized and really revolves around the patient. We are so impressed with every aspect of the program, from the secretary who scheduled everything, to the Dr.s, to the facility, etc.
We have already seen so many miracles happen. We know our baby is special, that he is meant to come at this exact time, and that he is meant to be ours. We will not know the extent of his symptoms until he is born. The surgery is not meant to fix everything, but will hopefully alleviate some of the more serious symptoms associated with this diagnosis.
If you would like more information, here are a few videos produced by the Children’s Hospital in Philadelphia’s fetal surgery program. Our Dr., Dr. Cromblehome helped found this program and has gone on to found a program in Cincinnati and now Denver. We feel very blessed to have him on our team.
If you have any questions, feel free to email me. Soon I will be on strict bed rest and will welcome any emails and be happy to answer any questions!
We love you all,
Nate and Cami
The Children’s Hospital of Colorado is amazing, and the Maternal and Fetal Health Center is WONDERFUL!
I got a wristband for every appointment during the day.
Getting ready for the MRI. The MRI was one of the most horrific experiences of my LIFE. I’m sure it was a kid’s MRI, it was so small! It took 1.5 hours and I almost pressed the panic button several times. I think I’m dreading my next MRI almost as much as the surgery!
By the end of the day, I decided I no longer like ultrasounds.
Nate has been so amazing and strong and has taken such good care of me and our baby throughout this whole process. We are so lucky to have him!