I Wanted Her So Much

Posted on Posted in Agenesis of the Corpus Callosum, Hydrocephalus, Induction/L&D, Stories, Ventriculomegaly

By Alyssa’s Mom

I started to envision and plan what her nursery would look like and whether she would grow up to play soccer like her older cousin.
I started to envision and plan what her nursery would look like and whether she would grow up to play soccer like her older cousin.

We were trying to get pregnant with our first child. When I missed my period I took a pregnancy test but it was negative. I was bummed. I thought for sure I was pregnant as I had felt constant nausea all week long. A few days later my doctor did a blood test. Lo and behold I was pregnant after all. We were absolutely thrilled!  Our baby was due in September and we could not wait.

Our first scare in the pregnancy came at nine weeks when I started bleeding. I thought for sure I had lost the baby. The next morning I had an ultrasound scan and was very relieved to see the heartbeat was still nice and strong.

At our 12 week scan, everything looked good. The nuchal translucency test results were normal. We finally felt it was time to share our good news with family and friends, and they were as thrilled as we were.

At 16 weeks I went for more blood work. A week later, on a Tuesday during lunch time at work, my doctors office called to report that my blood screen indicated the baby may have Down syndrome. Tears started to fall. Wednesday a genetics counselor helped us get schedule for an amnio to take place on Thursday. They offered us FISH results that would be available on Friday.

It felt like the longest wait of our lives. Finally, late that Friday afternoon, I got the phone call. The baby did not have Down syndrome. Everything looked normal. And then we found out it was a girl. Oh my, how excited we were.

The following Friday was my 19 week anatomy scan. The technician took her time. She told me things looked “good” but said she couldn’t see the baby’s spine or the heart and that we would need to reschedule, but also said I should see my OB before rescheduling. I didn’t think anything if it so off I went to my OB’s office. With the verbal results that came back, they said everything looked okay. I went back to work that afternoon finally feeling safe enough to share my great news with my colleagues and students.

The following Monday was when my world turned completely upside down. My OB’s office requested that I come in half an hour earlier so I could make my next appointment. I didn’t know of any other appointments I was supposed to go to, but I showed up earlier anyway. For some strange reason, as I drove to the clinic I had an overwhelming urge to just cry. I had no reason to feel like crying at this point but it was oddly there.

As soon as I arrived to the clinic, they led me directly into his office, not to the usual examination room.

Straight away I asked my OB, “Is everything OK with the baby?”

“Uunfortunately not,” he replied.

I couldn’t believe my ears. How could she not be OK?

He explained that our baby had enlarged ventricles in her brain, a condition called ventriculomegaly. He said he hadn’t received the complete ultrasound report until late Friday afternoon and didn’t want me to panic all weekend long. I was scheduled to go back to the genetics counselor immediately to discuss my options. I was overwhelmed with emotions and completely confused.

As I was waiting for the genetics counselor I Googled ventriculomegaly. I had never heard of it before. It didn’t seem like the worst thing just yet so I clung onto some hope.

The genetics counselor finally called me in. She said our baby had ventriculomegaly as well as hydrocephalus, and it did not look good. She scheduled me for a level 2 ultrasound for the next day.

The scan was over an hour long and the radiologist didn’t say much. Finally, he told us there were many things wrong with our baby’s brain. Her brain had not developed at all on one side and was mostly fluid. Her cerebellum was completely asymmetrical where one side looked like it was nonexistent. He couldn’t see her corpus callosum (the part of the brain that allows communication between the two halves). The ventriculomegaly and hydrocephalus presented asymmetrically as well. He told us it was no life for a child and it was very bad. Although everything from her neck down appeared normal, her brain was severely damaged. This baby would suffer. We were absolutely crushed.

We went home and scheduled another appointment with the genetics counselor for the next day. I frantically Googled to find other babies with the same diagnosis. I thought maybe it was Dandy Walker syndrome. We went in and they shared the results. I asked if it was Dandy Walker and they said no. Our baby had severe hydrocephalus, asymmetrical ventriculomegaly and so much more.

They offered us a pregnancy termination. I would be induced and have labour and delivery. I could not even begin to wrap my head around all of this. How could I give up on my baby girl? I had just started to feel her moving around inside of me. I wanted her so much!

After much discussion with my husband and more research online, we finally agreed this was the best choice for our little girl. The outcome for her life did not look good. We did not want her to lead a life of suffering. This was the most painful decision of our lives.

A pregnancy termination could be scheduled for the next day (a Thursday) or for the following Tuesday. It just seemed too quick for me to go right away so we opted for the following Tuesday. Those were six very long days. It was enough time for me to research some more and find other heartbreaking stories about ending a wanted pregnancy. I also found a beautiful organization called Forever Loved Angel Gowns where they make tiny gowns specifically for small babies. I had time to pick one up for my baby girl. I also found a photographer from Now I Lay Me Down to Sleep. This was so important for me as I knew I wanted to remember my little girl in as many ways as I could.

When I arrived Tuesday morning, I was still having many doubts. I needed more definitive answers. I told my husband I didn’t think I could go through with it. The genetics counselor talked to us again, saying the outcome for our baby did not look good at all. She had severe damage to her brain. She would never lead a normal life.

Next we saw the doctor, the same one who had performed my amnio two weeks earlier. She said, “I know you love your baby and want to keep her more than anything, but she will lead a life of suffering. She will probably never walk or talk. She may not even make it until full term.” It was then that I knew what we had to do. We had to let her go.

The doctor offered for us to see our baby on the ultrasound one last time and we didn’t hesitate. Of course we wanted to! She was laying there and it was so sweet, her little hand popped up as if to say hello or goodbye. It broke my heart that this was the last time I would ever see her alive. The doctor printed out a few pictures for us to keep, which I am grateful for.

I received my first dose of misoprostol at 11:00 AM and waited to be sent up to my private room. Every four hours a nurse would come in and give me more misoprostol. It was a very long and excruciating wait. Somehow I managed to sleep somewhat that night. At 6:00 the next morning my contractions began. I had never gone through labour before so I didn’t know what to expect. It hurt. A lot. But I knew this physical pain was nothing compared to the emotional grief I felt. I wanted to feel the pain if it meant having a chance to hold my girl and say goodbye.

At 9:10 AM my little girl was born sleeping. She looked absolutely perfect and more beautiful that I imagined. I just held onto her and kissed her. We had the chaplain come in and do a blessing. They took her for footprints and hand prints. The Now I Lay Me Down to Sleep photographer arrived and took lots of pictures of her with me, my husband and with my parents. I finally had a private moment with my baby girl. I didn’t want to let her go. After a few hours, it was finally time to say goodbye. Since we were having an autopsy done, we couldn’t keep her any longer. Saying goodbye and knowing I would never see her again was by far the most difficult thing I’ve ever had to do. And in an instant she was gone.

My placenta didn’t end up delivering after the baby so I had to have a D&C several hours after saying goodbye to my little girl. This meant staying overnight in the hospital one more time. I was finally released the next morning. Walking out those doors without my baby in my arms was absolutely heartbreaking. I didn’t know if I could leave. But I knew she was no longer suffering and would never have a day of suffering on this earth. I knew she was sleeping peacefully with the angels.

We got her cremated and brought her home so she would always be with us, right by our side.

I could not have gotten through this without the loving support from my husband and my parents.

Not a day goes by that I don’t think of her. I look at all her pictures and keepsakes quite often. Some days are definitely harder than others. I will never forget her. She will always be our firstborn who is loved and missed so very much.

R.I.P. my little angel baby.

 

 

Image courtesy of Pixabay