Keira


Keira Paige was born on April 16, 2020; 2 weeks earlier than expected. It was at the very beginning of the pandemic and everything was unknown and scary. My pregnancy with her was identical to our 1st born. I was comfortable, happy and confident. We couldn’t wait to see, kiss and hold our new baby in our arms. During delivery, Keira's heart rate began to drop and an emergency C-section was recommended. I refused and opted to try pushing one last time. It was only a moment later that our doctor announced it was a girl, put her on my chest and let me snuggle for a minute with her before they did their initial assessment. I don’t remember much about those next moments, except that the room was silent. I didn’t hear my baby crying and nobody was talking. My doctor brought her back to us all wrapped up, put her in my arms and with a very sad face she said, “I don’t want you to hear this from anyone else, but your daughter has physical signs of Down Syndrome, I'm so sorry”. The room was silent as everyone quickly left. No one looked at us, nobody said Congratulations…they just left. I couldn’t speak, I could hardly breathe, I was in complete utter shock and disbelief. I looked down at our new baby girl and said in tears… “what?? What just happened?? What’s going on?” I tried to reach into the depths of my absolutely exhausted mind to find a memory of what Down Syndrome even looked like. “Her face is just squished from birth. They would have seen this on the ultrasounds…they’ve made a mistake!”


The minutes after that turned into hours where we ‘Dr. Google’d’ Down Syndrome. I held my baby girl and just cried in disbelief…I didn’t see any resemblance of her compared to what the pictures google depicted Down Syndrome to look like. “Why was everything on Google so negative? Where were the good things?”

During those next few hours of us doing as much reading as possible into our daughters diagnosis, I noticed she was quite cold, she wasn’t wanting to nurse, and she was very limp and lethargic. Being a nurse myself, I knew something was not right. Keira's vital signs showed a very low oxygen level and the doctors were immediately notified. They came in to reassess her and immediately whisked her away to NICU. Seeing your new baby with IV’s, monitors and Oxygen tubes and not being able to hold her is something we never imagined would happen. When the doctors came in to talk to us, they asked us to sit down. They told us that they sent her blood away to confirm her Down Syndrome diagnosis. They also told us that she had 3 major holes in her heart and would be needing open heart surgery within the next few months, but she had to weigh at least 10lbs


Over the next 20 days in NICU, we struggled with Keira's feeding and being able to maintain an

adequate oxygen level. Keira didn’t have the energy to latch for breast feeding due to her heart which caused the decrease in her oxygen and energy levels. So I pumped. I swore to myself that sure she would get my breastmilk for as long as possible. I felt it was the only thing I could do for her when everything else was out of my control. The emotions I went through over took me like a title wave. The fact that she was diagnosed with Down Syndrome did not bother us because she was our baby and we were going to love her exactly how she was, but I was angry because of the medical complications and obstacles that she was going to have to face for the rest of her life. It wasn’t fair. I cried because I knew the way others would treat her, the comments from other children at school, the pity that people would feel for us…I was angry because no matter how beautiful and perfect she was in my eyes, she will be judged because of her extra chromosome. Others will see her as something is wrong with her, that she is less than them. That was just not fair to our beautiful and perfect new baby girl…and my heart ached.


Something that we were not prepared for after we found out about her diagnosis, was how many doctor appointments, cardio appointments, and SLP appointments there would be. There was constant monitoring of her heart including ECHOs, ECGs, feeding assessments, weekly weigh-ins to make sure she was getting enough calories to keep her body growing. It was emotionally taxing and getting extra daily help seemed next to impossible due to the pandemic. Ian expanded his company at the same time she was born and was extremely busy, so finding a balance was difficult. My fear and anxiety to keep her safe, oxygenated, healthy, happy, nourished, loved, and comforted over took me. Trying to keep all the appointments and people organized while trying to care for our other daughter and maintain somewhat of a normal life was hard. At 3mths old we ended up having to insert a feeding tube in addition to the oxygen she was on because she was exerting too many calories and a month later she was booked in for heart surgery at the Stollery Children's Hospital in Edmonton.


Keira's heart surgery was September 15, 2020, the day before she turned 5mths. Nothing can ever prepare a parent for the moment you watch your baby being carried away by the team of doctors and not being able to do anything about it. Her surgery took just over 6hrs. We didn’t know what to expect but seeing her on life support was shocking, We felt helplessness. She was on many different medications, each with their own monitor and IV going into her little body. She was intubated, puffy and very pale. There were chest tubes, machines beeping, and Doctors and nurses surrounding her. Everyone was so kind to us and explained her surgery. Not only did they make sure she was well taken care of, but they made sure that we were as well. There were a few complications post-op which kept her in the PCICU longer than expected but after a long 2 weeks in the hospital, we were able to bring her home. It felt like the whole weight of the world had been lifted off my shoulders and I could breathe again for the first time in what seemed to be forever. Our baby girl was finally on the mend and things would be ok. She was still on oxygen and her feeding tube, but as her heart got stronger, she would no longer need them.


Keira is almost 2 years old today and is doing amazing. She is strong, smart, determined, funny,

motivated and does not let anything slow her down or hold her back. She looks up to her big sister Khloé and wants to do everything Khloé does. Our life remains busy with medical appointments, therapies and daily obstacles, but we wouldn’t trade it for anything. Keira brings a light into our life that I never imagined possible. She makes us laugh almost every hour of the day and never ceases to amaze us with what she will come up with next. She understands everything we say and communicates in a very expressive way. Although her ability to physically speak will take some time to develop, she is able to find a way to let us know what she wants either through sign language, or by grunting and tossing a bowl or plate at me (when she wants snacks lol).


The uneducated me, prior to having Keira, did not fully understand how amazing Down Syndrome truly is. Because of her, we have been introduced to and surrounded by the most amazing communities and programs of people who have loved and supported us in a way I never could have fathomed. I once cried all day for Keira and what she will have to face; however, I am now so grateful and celebrate everything she is, everything she will be, everything she has overcome, and everything she will face in the future. We know she will be amazing at anything she wants to do and will always bring light and love to everyone she will meet…we know this because she already does. I am a better human with more love to give the world because we’ve been blessed with a beautiful daughter with Down Syndrome. An extra chromosome = extra love.



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