|Showing Off my 20 Week Pregnant Belly|
When I became pregnant with Weston I was candidly opposed to genetic testing. Why would I make myself worry through a pregnancy? I could see preparing for things that require surgery or immediate attention, but if there is nothing that can be done, than just wait a few more months to find out. Finally a nurse explained to me that people go through all these tests because they sometimes want to end their pregnancy. Ohhhhhh, that never crossed my mind. Ok now I REALLY don’t want genetic testing. EXCEPT, for Spina Bifida. Since my sister, Andrea, has Spina Bifida, I was aware of the inutero surgery they can do on babies and to me it was something worth considering if I was ever presented with that situation.
Well here I am! Situation presented! I did get a genetic blood test for Weston and Miles for Spina Bifida only. The tests were accurate both times. I am grateful I got them because I have had time to seek out the absolute best care for my Miles.
The first couple weeks after diagnosis I desperately scrambled to get the inutero surgery done. In this procedure, performed between 20-25 weeks of gestation, a large team of surgeons puts the mother and the baby under sedation (with separate methods) and opens the uterus. A neurosurgeon closes the opening the baby’s back and the baby is put back into mommy. The idea is that the spinal cord and nerves have less time in the womb to be exposed to amniotic fluid, which is damaging. Hopefully, things can grow better by being in a safer environment. That’s the short version at least.
When we got the diagnosis, I was told that Miles may be a good candidate for the surgery because it looked as though he had an S1 lesion. This indicated which vertebrae the spinal defect had occurred and where the opening is on the back. For Miles, it appeared on ultrasound that his was the very top vertebrae in his sacral spinal region. This is a very typical lesion location for Spina Bifida children and it is also the minimum level to qualify for the surgery. Right after the doctor told me about the surgery, she said that I would most likely not be considered because of my Type 1 Diabetes but she would look into it.
The next morning my mom and I were making calls. I told her I didn’t feel like making calls and she said, “You will be advocating for your child his entire life, you may as well start now.” So I picked up the phone. Phoenix Children’s Hospital was supposed to call me and guide me through this with resources but I never once heard from them. I was on my own. I learned that this specific surgery is done at two main hospitals, in San Francisco and Philadelphia. It is still in a clinical trial phase and the risks are enormous to mother and baby. The median birth age of these babies in 32 weeks (many born earlier) and that can cause a multitude of other health problems. Many moms are on bed rest from the time they get the surgery until when they deliver, all the while on several drugs with awful side effects to prevent the uterus from contracting and starting labor early.
Despite all the scary things I read, I wanted the surgery. I would do anything for my son. All of my reading made it very clear that insulin dependent diabetics cannot get the surgery. From reading what the recovery is like, I did understand the reasoning for this. Type 1 Diabetes in a complicated disease in itself and requires intense management. Blood sugars are affected by many different drugs. Healing can be affected. The fetus is affected. It would just be an added layer of risk that doctors aren’t yet willing to deal with.
But I’ll be damned if I didn’t try! So I had every contact I know in the medical field reaching out to these hospitals. My mom discovered that Houston Children’s Hospital had, only 3 weeks before, done the first orthoscopic version of this surgery. Meaning the mother did not need to be cut open, therefore decreasing many risk factors. Aha! This is my surgery!!! Bryce and I texted everyone and I asked them to pray for this conversation with Houston Children’s. My best friend Jessica said, “They just have to take you.” That’s the way I saw it too. The just had to. I would not take no for an answer. I would pay any amount of money. They couldn’t get rid of me easily.
From those phone conversations, I will say that I like Texans. They were the kindest and most compassionate nurses I have talked to yet, and they had cute accents. The head nurse of the neonatal unit spent a long time on the phone with me. She asked me lots of questions and I apparently gave the right answers because she said, “Your son may be a great candidate for this! Let’s get you out to Houston for a work up.” Oh joy! I am THIS close!
“Well, there is one more thing,” I paused. “But I’m afraid to tell you because I know what you will say…I am a Type 1 Diabetic.”
“Oh,” she said, sounding really sad. “You don’t qualify then. There is a hard line when it comes to Type 1 Diabetes because at any point this could become an open procedure where they do cut the uterus open and so we follow the same criteria as those hospitals. You did the right thing by calling us. You had the right idea.”
Heart crushed. I told her she was my last hope. She apologized and said she hopes Miles does very well.
This conversation with Texas happened within a couple days after Miles’s diagnosis. I did still make attempts for the next couple weeks through various avenues but to no avail. My mother left many messages with specific surgeons in Houston but came back with the same answers. People had medical contacts at Standford, University of Washington, this guy is the best, try this hospital. But it came down to a few main factors. Only a couple hospitals do this procedure and it takes teams of people and years of training so a different hospital can’t just try it out. And they aren’t going to take a Type 1 Diabetic. They just aren’t. We found out it is also done in Germany and Brazil and Bryce and I started researching flights to these places. We had to stop ourselves and take a step back. Maybe the “No” answer is actually the answer to our prayer.
From meeting other Spina Bifida moms, I got the names of the top 2 pediatric neurosurgeons for Spina Bifida in Phoenix. Dr. Shafron at Phoenix Children’s Hospital and Dr. Moss at Cardons Children’s Hospital. Bryce took a day off work and we interviewed both. Of course we made a day of it and treated ourselves to Texas Roadhouse afterward. Who wouldn’t?
Both doctors were not huge fans of the inutero surgery. They both admitted there may be some benefits, especially with children not need shunts after birth, but many have much more severe problems because of it, like Cerebral Palsy. It brought me some closure. There were no more avenues to take and no special contact that could magically get me in for this surgery. And the truth is, it may not be the right choice for our son. So we moved forward with preparing for surgeries after birth.
More to come on how we picked our neurosurgeon.