Diagnosis: Ventriculomegaly
By Alyssa’s mom

We were trying to get pregnant with our first child so once I missed my period I took a pregnancy test on a Friday and it was negative. I was so bummed. I thought for sure I was pregnant as I had felt constant nausea all week long. The following Monday I went to my doctor for a blood test and low and behold, I was in fact pregnant! We were absolutely thrilled! We were due in September and could not wait!

Our first scare in the pregnancy came at 9 weeks when I started bleeding. I thought for sure I had lost the baby. The next morning we went to have an ultrasound scan and saw the heartbeat was still nice and strong. We were so relieved!

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

At 16 weeks I went for more blood work. One week later, on a Tuesday, I received a phone call at work during lunch time telling me I had tested positive for Down syndrome. Tears started to fall. On Wednesday we went to see the genetics counselor and we were offered an amnio. We went for the amnio the next day on Thursday, and they offered us the fast test results the day after that. It felt like the longest wait of our lives! Finally, late that Friday afternoon, I got the phone call. The baby did not have DS. Everything looked good, and we found out it was a girl! Oh my, we were very excited! 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.

One week later on Friday, I had my 19 week anatomy scan. The technician took her time. She told me things looked “good” but couldn’t see the baby’s spine or the heart, and that we would need to reschedule. Then the technician told me to go see my OB first before rescheduling. I didn’t think anything if it so off I went to my OB’s office and 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.

My world was turned completely upside down on the following Monday. My OB’s office had called to request me to 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 sense 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 the usual examination room. I looked at my OB and I asked straight away “Is everything okay with the baby?” That was when he replied “unfortunately not.” I could not believe my ears! How could she not be OK? He went on to tell me our baby had enlarged ventricles in her brain, a condition called Ventriculomegaly. He told me he didn’t receive the complete results 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 following my OB appointment to discuss my options. I was so overwhelmed with emotions and completely confused.

I Googled ventriculomegaly while I waited for the genetics counselor. I had never heard of it before, but it didn’t seem like the worst thing just yet, so I clung onto some hope. The genetics counselor finally called me in and told me the results. Our baby had ventriculomegaly but also had hydrocephaly. It didn’t look good she said. Then she told me I would be going the next day (Tuesday) for a Level 2 ultrasound scan.

More waiting. The scan was over an hour long. As we had the scan, the radiologist didn’t say much. Finally, he told us there were many things wrong with our baby’s brain. He said the baby’s brain was 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 hydrocephaly presented asymmetrically as well. He told us it was no life for a child and it was extremely bad. Although everything from her neck down was perfect, her brain was severely damaged. This baby would suffer. We were absolutely crushed.

We went home and rescheduled another appointment with the genetics counselor for the next day (Wednesday.) 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 termination. I would be induced and have labour & 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 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.

Termination was set to be on that Thursday or the following Tuesday. It was just too quick for me to go right away so we opted for the following Tuesday. Six very long days. Enough time for me to research some more and find other heartbreaking stories about terminating 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!

I still had many doubts when I arrived on Tuesday. 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 and told us 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. We moved on from there, and went into see the doctor. I asked more questions. This doctor was the same one who had performed my amnio two weeks earlier. She told me 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. Upon hearing those words, 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 ultrasound one last time. We didn’t hesitate, of course we wanted to she her! It was so sweet to see her with 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. I am ever so grateful for the doctor who printed out a few pictures for us to keep.

I received my first dose of misoprostol at 11:00am 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 6:00am the next day, my contractions began. I had never gone through labour before so I didn’t know what to expect. It hurt, a lot, but the physical pain could not compare to the emotional grief. I wanted to feel the pain if it meant having a chance to hold my little girl and say goodbye.

My little girl was born sleeping at 9:10am. She looked absolutely perfect and more beautiful than 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 NILMDTS 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 and 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 her, but I knew she would not suffer and would never have a day of suffering on this earth. I knew she now slept 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, very much. RIP my little angel baby.