We arrived at Winnie palmer shortly after the ambulance had arrived with Hannah. she had a team of neonatologists working over her. every doctor that was on hand was working her case feverishly. Hannah was having uncontrolled seizures, so they immediately started her on Ativan and phenobarbital. we started seeing a decrease in her seizures, but she was far from out of the woods.
Over the next few days we learned a lot about Hannah and her condition. Holoprosencephaly, as we learned in our research, was a mid-line brain abnormality that causes the brain to not divide in early formation. So, instead of having two hemispheres like most people, she has one solid mass. Underlying brain structures were also effected including a fused Thalamus, Pituitary, and Hypothalamus. these midline defects extended into her facial structure and bones including her cleft and absence of a nose or nose cartilage/structure.
the doctors inserted an NG/OG tube for her feedings and began her and boluses of formula. Therapists and specialists came to see her almost hourly to check and adjust what we knew. Hannahs vitals were all over the place. her seizures while reduced from when we brought her in, where still wildly out of control. so new medicines were adjusted constantly just trying to find her a baseline. We would later discover that her epilepsy was intractable…uncontrollable. Her oxygen levels would yo-yo up and down, a suspected side effect of the depressant nature of anti convulsants and her very fragile state. We saw social worker every day and a spiritual counselor every day seemingly preparing us to go home without our daughter.
We found refuge in the Ronald McDonald house on the hospital campus. My in-laws, Shelly and I kept vigil with Hannah, though only one of us was allowed with her at a time especially overnight. So we took shifts. each day more news, more tests, more negativity. One day Shelly and I went on a walk and sat on a bench outside the hospital overlooking a small pond. we sat on that bench and couldn’t even talk…we just cried together. we busted wanted her to be OK. We wanted to be home with our little girl. We didn’t want her to die int he hospital.
The doctors told us there really wasn’t anything more they could do except treat her palliatively. which basically is comfort care and preparing for end of life. they brought us into a room with a palliative care doctor, our social worker, and several of our doctors where they discussed our options and what to expect. they would discharge us how with equipment to make her comfortable, a large bottle of morphine, and told us not to be surprised if she doesn’t make it through the weekend.
“Mother tearful at patients bedside” we later saw our social workers notes in our case file. this one was a bit of a joke with us in years since. I mean what do you expect when you are told your child would die in a matter of days? We elected to have a priest come and say last rites to Hannah, and had pictures taken by an organization that helps grieving families of miscarriages, still births, and infant deaths. We really never knew how long we would have her.
The hospital really was trying to help. but they had no idea how to. Hannah’s condition is extraordinarily rare to be seen in a clinical setting. most children diagnosed, die in the womb, or very shortly after birth. Hannah serving the weeks she has in the hospital defy 99% of the odds so far…and she’s far from done.
We signed our discharge papers, had all our necessary paperwork including a DNR order we were encouraged to sign for her. and in one quick ambulance ride we were home. Hannah was discharged under Hospice protocols and palliative care, so a nurse met us at our house for overnight care, and the doctors came and checked in on Hannah to monitor vitals. oxygen was set up and we were signed off as good to go.
What we didn’t know then was that our journey wouldn’t just be lasting a few days. this was just the beginning. Our journey is going strong still after 8 years. Hannah is defying odds, teaching doctors a thing or two along the way. She is our puzzle, but she is our daughter first.
Going through all these events, and reliving Hannah’s birth it simply amazes me how little we really did understand at that point. We were researching on the fly, getting crash courses in neurology, anatomy, pulmonology, pharmacology, genetics. it was so overwhelming. But my wife will always tell you what got us through these sequence of events was our strong relationship, my endless positivity (yes, I’m Mr. positivity) and our Faith, HoPE, and Love for our baby.