By Holly Love
Six words changed our lives forever. Six words shattered our dreams and broke our hearts:
“There is something wrong with the heart.”
At my regular 20-week ultrasound we were so excited to find out the sex of our baby, but little did we know we would be finding out that our boy may or may not survive childbirth, let alone to see his first birthday.
We were thrust into a world of medical terminology, machines, medications, hospitals, doctors, and nurses, and the most fear we have ever known to exist.
With nearly one in 100 children born with congenital heart disease, it is the most common birth defect.
The worst thing a parent could ever imagine is losing a child and this is something that we, and other heart parents, have to consider every single day of our children’s lives.
Our son, Owen, was born on June 11th, 2014 at the IWK Children’s Hospital in Halifax, Nova Scotia.
His diagnosis at birth was a double inlet left ventricle, transposed great arteries, atrial septal defect, ventricular septal defect, hypoplastic arch, and hypoplastic right ventricle.
To make it simple, our son was born with half a heart.
After birth, I didn’t get to hold my son – he went straight to the pediatric intensive care unit where he was immediately started on medication to keep his heart pumping.
We were told he would need a series of three surgeries to survive, and his condition was considered palliative. This meant his heart would never be fixed, but “re-plumbed” to give him the best possible outcome.
This also means a lifetime of medications and check ups, limitations and setbacks.
At six days old, Owen underwent his first open-heart surgery. We spent about a month living in the hospital and finally, were able to take him home. We had to weigh him, check his oxygen saturation levels, record every single drop of breast milk he drank, and call in to cardiology every single day to report these numbers.
If they weren’t happy with any of them, we had to go to the IWK and we were usually admitted.
At one point, we even went home on oxygen and had to give him needles twice a day to prevent blood clots.
At six months old, Owen had his second open-heart surgery, and amazingly, we went home four days after.
Unrelated to his heart defects, he developed a condition called auto immune neutropeania, where his body did not produce enough white blood cells making him prone to infections.
If an infection were to spread to his heart, we could be in serious trouble. He could contract endocarditis, an infection of the inner lining of the hear, causing a possible stroke or even a complete heart failure.
Impossible for me to return to work full-time, I got a part-time job during evenings and weekends to help pay bills. However, Owen became ill multiple times and we were admitted to the hospital every time he had a fever. Eventually, I had to give up my part-time job.
With my fiance, Martin, and myself originally from Ontario, we have had many our friends and family there supporting us.
My mom has been here with us every step of the way, taking time off of work and flying to Halifax numerous times. My dad and brother have also been here with us, taking as much time off as possible. My best friend even flew out from Edmonton, Alberta to be with us for Owen’s second surgery.
We still have another open-heart surgery to get through, and the unknown of the future is very scary.
We couldn’t have survived all of this without our amazing family and friends, but what really keeps me going is my amazing son, now one-year and nine-months-old. He has been through so much, but he is always smiling and happy.
There are days where I don’t think I can survive, but he keeps me going.
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