When I was pregnant, our doctors told us we were at high risk of having a baby with Down Syndrome. At our first ultrasound, they weren’t able to get a clear picture of her heart, so they sent us to the Royal University Hospital in Saskatoon for a fetal assessment. Again, they were unable to get a good picture, so we were sent for a fetal heart assessment.
It was at this time that it was suggested that we get an amniocentesis to learn for sure whether our baby would have Down Syndrome. We were also given the timeline for when we could abort – we told them that this was not an option for us. We went back when I was 20 weeks pregnant for another fetal assessment where she was diagnosed with Atrioventricular Septal Defect (AVSD). After a very long ultrasound, we were taken to a private room. A doctor came in and sat down with us.
“Your baby has a hole in her heart.”
Those were the scariest words we had ever heard. I had so many questions… Did I cause this? What did I do? Will she die in my belly? How can I save her? The questions were endless. We had never heard of CHD and we had never heard of an AVSD. We didn’t know anyone who had had heart surgery. He tried to help us understand that our baby would survive but would need a major Open Heart surgery. He told us that this was a routine surgery as far as heart surgeries go.
A week before my induction, we started our stay at the Ronald MacDonald house in Saskatoon. There were so many people in the room for her birth, wearing gloves and masks. It was scary, but I knew that it was for our sweet baby’s safety. Dad cut the cord and we were able to hold her. We named her Kasey and she was perfect. They performed all the necessary checks and then we were able to hold her again before she was whisked away to the NICU for more tests. When we saw her in the NICU, she had tubes and IVs all over her, but she was stable, she was “okay.”
The nights in the maternity ward were the hardest. I was sharing a room with other moms and I could hear their babies. I could hear them comforting their babies and yet mine was on a totally different floor. Was she crying? Did she feel alone? Was she scared? I would go downstairs to sit beside her for a few hours in the middle of the night. It was confirmed that she had Down Syndrome at 14 days old but we knew right away when she was born.
We spent her first 5 months in 3 different hospitals, on 7 different wards. She spent 14 days in the NICU, then was transferred to the Pediatric Ward where I was finally able to spend the whole night with her. She was there for 4 days when we were discharged. We were home for week but had to rush her back to the ER in Prince Albert because her breathing was shallow and she had a slight cough. We stayed there for 10 days then we were transferred to the PICU at RUH.
She was intubated for a month with pneumonia. It was so scary. During this time our family lived at the Royal University Hospital. Kasey overcame the illness but she was placed in reverse isolation in the Pediatric ward due to heart failure. We tried to get her to gain weight for her heart surgery while we waited.
The morning of her surgery we flew to Edmonton. She had heart surgery 2 days before she turned four months old. We spent a month in recovery back and forth between the PCICU and the cardiac ward due to some complications. On her 5-month birthday, we flew back to RUH in Saskatoon and were finally discharged 4 days later. We have been home on heart medication and Pulmonary hypertension meds ever since.
She has many appointments with cardiology, dieticians, therapies, respiratory, hearing and eye specialists. She was placed on home oxygen after a sleep study showed that her oxygen drops at night. She had been fed by an NG tube since day one and now has a G tube in her belly for her liquids. She can eat and is starting to love it. We are learning sign language. She is the boss and she lets us know when she is done with something or someone! Kasey is amazing. We are so blessed to have her and all my children. She has taught us so much about ourselves this past year. She taught us how tough she is and to keep going.
If a small, fragile newborn can go through all of that – we can get through anything.
Without our family and friends, I don’t know how we could have got through this year. Kasey has shown as all we can be and more. She is our everything and we are so lucky to have her in our lives.
- Jessica Rabittskin (mom)