"Our Baby was Diagnosed with Hydrocephalus When I was 22 Weeks Pregnant."
Our baby was diagnosed with Hydrocephalus when I was 22 weeks pregnant.
From what we knew and were told, Hydrocephalus isn’t typically a fatal neurological condition, but the amount of fluid our baby had, we were considered a “severe case”. On a scale from 1-5 our doctor said we were at a 4.
We were told that when 27 weeks came around, the fluid would continue to progress a lot quicker. We didn’t know how fast “quick” meant, but as our next appointment came around, we were mentally preparing ourselves to hear that there would be more fluid. I don’t think my husband Scott and I could have ever prepared enough to learn that in four weeks.
Our baby had gone from having 17mm of fluid to now having 39mm.
Both us and our doctors were taken aback a bit and the prognosis of the whole diagnosis changed. Initially, it was explained that our baby would be born with special needs and extreme delays.
But with how much fluid was building up in such a short amount of time, doctors said our baby likely would not live past 10 weeks after birth.
After learning about the quality of life our baby would have in those 10 weeks, with lots of thought and heavy prayer, we as a couple decided to seek palliative care. We didn’t want our baby to experience any hurt or pain. We wanted them to only feel love, and not have to be confined to a hospital. So we decided that once our baby was born, we would do comfort care, and allow them to peacefully pass away whenever they felt ready to be with God.
My husband and I are Christians, and we believe in God. And we wanted to be sure that any decisions we made, they were honoring God and our baby. With that being said, there would be no better place for them than in Heaven where they could live a healed, pain free life.
As my pregnancy continued, the fluid did as well. Each time we left the hospital we felt more and more defeated. I didn’t ever know that joy and grief could coexist, but they did. We were celebrating the life we had been blessed with, all while grieving what was to come.
I was 31 weeks pregnant and our baby’s head was the size of a baby at 41 weeks.
At that point there was so much fluid that doctors told us their ability to breathe on their own at birth had been compromised. And with the size of their head, when it could come time to deliver, I’d need to deliver via a vertical incision cesarean.
But even with a vertical incision, doctors weren’t sure that that would be a safe amount of room for our baby's head to fit through.
With the additional risks of the type of cesarean put on me, it was highly recommended that prior to delivery, our baby have some of the fluid drained. I was praying and hoping that as the date of my scheduled cesarean got closer, that the fluid would stop building up or at least slow down.
Because with the drainage came the risk that our baby could pass away in utero.
With how much the progression of the hydrocephalus changed our baby’s prognosis, I was really praying that I have a live birth to at least be able to hear my baby's cry.
My cesarean had been scheduled for March 31st.
There was no avoiding the drainage at that point. Our baby’s head had gotten so big, doctors couldn’t even view it all at once on the ultrasound scan.
Thursday, March 24th we visited the children's hospital for the last time and had the procedure done. It was 100% painless for me, and I was assured that our baby wouldn’t feel pain. If anything, it would be a relief to alleviate the pressure the fluid was causing.
Our doctors removed 650mL of fluid, roughly three cups of cerebral fluid in our baby’s head.
With the amount of fluid that was removed, a vertical cesarean was no longer necessary and instead, I could deliver via my previous incision, since my daughter was born via cesarean as well. Everything about the procedure went as well as it could have gone.
There was some bleeding with the baby and we were told that with that, that increased the risk of our baby passing away.
After the procedure was done, leaving the hospital I had a mix of emotions. It was my last appointment there which meant my pregnancy had come to an end. But then being excited that we were a week away from meeting our baby. Just like we did with my daughter and her pregnancy, we chose to wait to be surprised on the gender of our baby and reaching the end of my pregnancy meant we could meet our baby. Finally know whether we were having another daughter or having a baby boy.
As the hours passed after our procedure I knew something was off. I hadn’t felt our baby move.
By Friday afternoon, I still hadn’t felt any movement and I knew. In my heart I knew our baby had gone to be with God.
Monday, I met my OB for my pre-op appointment since my scheduled cesarean was Friday. We checked on our baby and it had been confirmed that our baby had passed away.
I have never hated being right as much as I did then. There was no way of telling when exactly our baby passed, but I knew it was Thursday. Instead of delivering Friday, we delivered our baby Tuesday the 28th. Exactly one week after our daughter Lauren’s second birthday.
Tuesday morning we were surrounded by so much love and prayer. Scott and I felt so much peace.
We were sad and heartbroken but that still didn’t rob us of the joy we felt that we were finally going to meet our baby.
Our son Liam Roger Bakker was born at 12:40pm. Weighing 6 pounds 8 ounces and 21 inches of pure and utter perfection.
Our daughter got to meet her brother. Our parents and siblings got to meet their new grandson and nephew. We were even able to have our pastors come and pray over us and our son.
While I still wish I could have heard our son cry once, I know that it was better this way. We would have never been able to watch our son pass away after meeting him. And by all of it happening this way, we didn’t have to. Liam is healed and he’s with God. We know we'll be reunited again one day.
We wish we could have had a lifetime with him, but we know that we’ll have an eternity together as a family in Heaven.
We’ll miss Liam every second of every day for the rest of our lives. I’d relive the heartbreak and hurt I had through the 9 months to get that joy back of having the time I did with Liam.
God is good all of the time, and even through this heartbreak we know and trust that this was God’s plan for us.
This blog was written by Vanessa Bakker in Hanford, California. Vanessa and her husband, Scott, have been married for four years and have two beautiful babies together; Lauren, who is two, and Liam, who was born into the arms of Jesus.