I'm 30 weeks pregnant at this time. I'm lucky enough to work in an OB/GYN clinic with amazing providers, staff, and patients. At our 20 week ultrasound, something wasn't right. I had a level 2 ultrasound within days. The level 2 ultrasound then referred us to get a fetal MRI.
The MRI confirmed what our perinatologist suspected - Holoprosencephaly [HPE] (where the brain fails to develop into two hemispheres) and Dandy Walker Syndrome [DWS] (cerebellum fails to fuse). Our prognosis at that time was not good. If he were to live, he will never move independently. His eyes will (probably) not be able to track light/communicate. He has a possibility of being both blind and deaf.
Over the last ten weeks, my husband and I have been devoted to doing research on these conditions. We've even found a splinter of hope in the stories of other families affected by HPE and DWS. I have had fantastic support from my parents, and my workplace.
I've been forced to remind myself that the people who ask about my (ever-increasing) bump don't know our troubles or diagnosis. They come from a good place - most of these people are my patients, or strangers. Everyone feels the need to comment on a pregnant woman. I've been trying to find the joy I felt when I was pregnant with my daughter - our son is very active at times, and I try to smile and enjoy his little nudges and kicks. It's very difficult. But, as I said, Jason and I have had hope for the last week. Our son could possibly live.
Yesterday, I had another level 2 ultrasound. We checked his heart, and all of that. His heart is fine! No defects to worry about! But..
His head is measuring at 40 weeks. I'm 30 weeks pregnant. He has developed hydrocephalus. This is a condition that occurs with fluid on the brain, enlarging the entire head. This is what we hoped/prayed would not happen.
This means, I am to have another fetal MRI. We are going to re-examine the brain, try to assess his compatibility with life. His prognosis is lower than ever before.
We need to deliver him soon. The larger his head gets, the more dangerous for both of us. Depending on the results of the MRI, we have two/three options.
- Classical C-Section - This is a very large vertical cut. It would be a very difficult delivery. Also, with a classical cesarean, any future children would have to be very well planned and monitored. It would mean increased testing, early c-section, and possibly difficulties conceiving again. Cons : I don't want this. With our son's condition, it would be a very difficult operation.
- Drain the fluid, natural birth - This consists of using a (needle?) to poke through his skull to the pockets of fluid causing the hydrocephalus issue, and then inducing labor. Pros : Hey, 'natural' birth! Cons: He's breech, might not work.
- Drain the fluid, "modern" C-Section - Again, really big needle into my belly, through his skull, but then a lower transverse ("normal") c-section. Cons : People cutting into you when you're wide awake and feeling every pull. But he's breech, so, it's the most desirable option.
I'm just feeling so lost, so crushed right now. The process of draining his fluid may or may not injure him. He may or may not be stillborn. His prognosis is shrinking every time. I just want to hold him in my arms, feel his little breaths, kiss his forehead.
We're trying to hold off on anything until 32 weeks. Another week and a half. I wasn't expecting this. I was expecting nine more, ten more weeks of pregnancy. Like I said, it seems that the longer we wait.. the more dangerous. But I want to give my son a fighting chance. 32 weeks, maybe. Maybe. Maybe. Maybe.
I'm preparing for him to be stillborn.
I'm preparing for him to live for an hour.
I'm preparing for him to live for a day.
I'm preparing for him to live for a week,
I'm preparing for him to live for a month.
I'm preparing for him to live for a year.
I'm preparing for him to live for years.
I'm preparing for him to go to college.
I'm preparing for him to outlive me.
I just have no answers. No answers at all. We can't know the future, we can't even dream.
Katie, I just found out about you guys from another hpe mom. My daughter Paige was initially dx after birth with hpe and dws. They had monitored her before birth and were concerned only with the cyst they saw which they said might require a shunt after birth. After birth we were dx with the hpe, but miracle of miracles, the cyst was gone!!! She has mild semi lobar hpe and will be turning 7 June 1!!!! She can walk. She can, very limitedly, talk. She has the sweetest spirit and a great sense of humor. And she goes through so much and keeps a smile on her face. We don't know how much time we will have with her as she has already outlived her life expectancy. But I want to offer you this hope. Many children with hpe have had hydrocephalus and gone on to be shunted and be ok. Each child with hpe is different, but they know so much more now!!!! It doesn't have to be a death sentence anymore. Will he be "normal"? No. But he will be so much better than just normal!!! You will appreciate every tiny accomplishment. Every smile will be a celebration. And what could be better than that? I'm here if you need me, as are the many other hpe parents that have been in your shoes.
ReplyDeleteKatie,
ReplyDeleteAs I read this, I just want to give you a hug be there for you in this struggle. I wish I had the right words for you. I'll keep you and your family in my prayers. Just know that I'm here to help in any way I can (especially giving hugs and listening) And if you ever need someone to go with you to an appointment, let me know. I'm pretty flexible these days.
Just let me know what I can do for you.
Cassie Johnson