Interview with my mom about my birth - Pt. 1

When did you know that I had Hydrocephalus?

            I found out that you had Hydrocephalus when you were 2 weeks old. Even though you had been born 7 weeks premature, you weighed 4#6oz and did not have any serious health issues. At about 2 weeks they were getting ready to release you. But a routine ultrasound (or CT scan, I can’t remember) showed some swelling in the brain.  They did more tests and determined that you had Hydrocephalus.

           In your situation, you had a Grade III (or IV, depending on which report, but I would have to go look for that!) Intra-Ventricular Hemorrhage. You had a serious brain bleed in one of your ventricles and this lead to scarring.  The scarring blocked the Cerebrospinal Fluid from circulating properly. The doctors were hoping that the scarring would resolve on it’s own, but it didn’t, and your head continued to fill up with fluid, causing the skull to enlarge, so at 4 weeks you had your first surgery to put in a shunt.

Me with my Grandma Hanly!

What did you think when they told you?  What did you feel when the doctors told you I had Hydrocephalus?

            I, of course, was in shock and not expecting this at all. The whole pregnancy was high risk, starting with the complications of me doing IVF, which resulted in Ovarian Hyperstimulation Syndrome. (That story is a whole other blog!) I was hospitalized numerous times during the pregnancy, and on bed rest the entire pregnancy. I was pregnant with 3 babies until the 3^rd month when the doctors could no longer find a heart beat. I had weekly doctor’s visits (on top of having a home health nurse check on me twice a week) and at each doctor’s visit they would do an ultrasound and find something was wrong with you or your sister. We would hear that one of you didn’t have a kidney, or something, which would send us into a panic until the next week where you would have a kidney, but then it looked like one of you was missing something else, like part of the brain, or lungs, or just something.

  Part of the problem was your positioning. Hanley was laying horizontally, tucked up under my ribs, while you were “breech” bottom down, facing backwards. Your head made it hard for them to properly see Hanley’s heart. There always was a concern about her heart, and the final diagnosis was that Hanley had Transposition of the Great Vessels. So we did our research on that – knowing that she would need surgery, but all your “tests” were coming back saying that you were in good shape.  So we weren’t necessarily concerned about you. However, prior to that, at one point, the doctors didn’t think that one of you was even going to survive, and wanted to “terminate” that baby during the pregnancy, but I didn’t want to do anything that would risk the other baby’s life.

            As it turns out, despite me being on strict bed rest, my water broke at 33 weeks and when we went to the hospital in the middle of the night, the doctor was all ‘nonchalant’ about it until he checked and could feel your foot poking out. So then it was a rush to get me prepped for an emergency C-section. We always had planned on a C-section because of Hanley’s heart, but just hadn’t planned on it being this early.  Since it was Thanksgiving, my doctor made a joke about carving the turkey, and the pediatric heart surgeon came running in teasing me about, “I thought we were going to wait a few more weeks!”

            For the C-section, I was put under so I didn’t see you being born, and don’t really know what happened, other than they cut me from bellybutton on down to get you both out quickly. It wasn’t until 12 hours later that I was able to see you both in person. While I was recovering, my mom brought in Polaroid photos that they had taken of you and Hanley in the NICU, so small, covered in wires and I burst out crying at how horrible the situation was and how bad you looked. My mom then felt terrible because she didn’t know that this was the first time I had seen you.  My younger brother Christopher was able to be one of the first family members to see you – the nurses thought he was the dad and whisked him into the NICU and he didn’t argue! 

         So back to your question. I was so focused on Hanley’s heart condition (which turned out to be Tetralogy of Fallot) that I was so shocked that there was also something “wrong” with you. I didn’t even know what it was!  I didn’t know what to even think or predict or plan – because this was a whole new unknown thrown at me.

They told me that preemies can have trouble regulating their blood pressure as their blood vessels are very fragile. And all I can still picture to this day is this one old NICU nurse who would always SLAM the door to the babies isolettes – she wasn’t very gentle to the babies, in my opinion, and I always wonder if she caused the brain bleed.

See how tiny I was!

What did you do to find what it was?

            I was given some handouts from the hospital, and of course got all the information we could from the doctors. You were born in 1996, and the internet still was very basic, so there wasn’t much information I could find on there. I was able to locate the address of the Hydrocephalus Association and got a lot of materials from them. One book I still have, and still refer to is Hydrocephalus: A Guide for Patients, Families & Friends (Patient Centered Guides) by Chuck Toporek.  But that still wasn’t much help. I ended up throwing out all the “What to Expect” type books because they just didn’t apply to you or Hanley at all.  In the first 4 years of your life, I only met one child with Hydro – but her case (how she got hydro and her symptoms) was so different than yours that it was hard to relate. I felt very alone with no resources.

After the shunt was put in, the swelling went down, but you can still see the soft spot and the spaces between the skull plates.