Kevin and I went to my regular checkup on October 15th hoping to get to find out the gender of our first baby.
What we got was SO much more.
When the lady doing the ultrasound that day got quiet and asked if she could do an internal sono to get a better look at the head, we knew something was wrong. She went and got my OB to which we knew something was REALLY wrong. My OB came in and said that the “ventricles in the brain were dilated, which meant they were bigger than they should be”. After being transferred to a specialist, in a different hospital, we did another ultrasound. To which that doctor asked to do an internal one as well. When the specialist finally sat down with us, he simply said, “I wish I could tell you that this was just about the ventricles….but it’s not. The brain did not develop like it should have. It did not split into the two hemispheres….”
That day, Kevin and I were bombarded by so much information. Words we have never heard of, conditions and disorders that we never thought we would have to deal with…. It was too much. Why was this happening? This is our first baby. Why my first pregnancy? But luckily, there is a just and perfect God who knows what He is doing.
That day was probably one of the hardest days of my life. There was no stopping the tears, the thoughts running through my mind, the sorrow, the hurt…. It wasn’t until the next day that I could talk about it without crying. That is all because the night we found out, Kevin and I sat down and just prayed. We gave this situation up to God, not asking to understand why, but just to help us trust Him and know that He always has a plan. It was because of this that we can sit here and tell you our story (and now part of our testimony) without hurt and suffering. We know that this was all supposed to happen.
Just a few days later, on my birthday (the 17th), we got a call from my OB just wanting us to talk to him and ask him any questions we had now that it had been sitting on our brains for a couple days. We learned that baby has the brain disorder called holoprosencephaly (or HPE). HPE is the umbrella term used for the process of the forebrain not splitting into the two hemispheres. HPE ranges from mild to moderate to severe. Mild would mean that there has been some splitting but not all the way and severe would mean that there was NO division whatsoever. Baby Pragel has the most severe case of holoprosencephaly. There was absolutely no attempt at even trying to split. Even the connecting tissues between the hemispheres didn’t do their job.
The best case scenario for a baby with the severe form of holoprosencephaly is a short lifespan. There is always the chance of the baby not making it full term and dying in the womb. If baby makes it out alive, the quality of life depends on how we want the doctors and specialists to treat Baby and how severe the baby’s condition is. Most severe cases, from what we understand, generally only survive for several months.
Today, October 28th, we went back to the specialists to talk and try to understand more. We learned about the causes of holoprosencephaly and what it means for the future. Because there is no family history indicating that this was a heredity thing, this is a 1 in 16,000 chance of happening. The only thing I can say is that this baby is special. We may never know why this happened but we were told that this is very unlikely to happen to us again. Most likely, it’s just a genetic hiccup. Either our genes had a “misspelling” or there is an extra chromosome somewhere. The most common type of chromosome disorder that it would be is Trisomy 13. We did take a blood test today that will most likely tell us if baby does have Trisomy 13. If baby DOES have Trisomy 13 on top of HPE, then the life expectancy decreases dramatically. Most Trisomy 13 babies do not make it out of the womb.
Because we are still pretty early in the pregnancy, there isn’t much else we can do. We will get the results from the blood test back in a couple of weeks to show us if Baby Pragel does or does not have Trisomy 13. When we get further along, there will be more visits and testing done to help us determine just how severe this all is. Baby will get an MRI done in a month or so to really help us determine how severe it is and to help us better prepare for when the time comes to deliver. The truth is, this journey is just beginning and there will be A LOT of unknowns until the baby is born. The doctors and specialists can generalize the outcome and give us all scenarios that are possible, but we will not know what exactly this baby has in store until it is born.
It can be very hard not knowing what to expect but we firmly believe in a Sovereign God. We know that He has a plan and a purpose for this happening to us. He gives us a peace within us that no one else could. He is the reason we are getting through this. We trust in Him and we have faith in Him. We pray for the best possible outcome but know that His will is the best and only way to go.
So here we are, on this unexpected journey.
“I know who goes before me
I know who stands behind
The God of angel armies
Is always by my side” (Whom Shall I Fear by Chris Tomlin)