Newborn | Manitoba | Condition: Hypoplastic Left Heart Syndrome.
Five weeks before our son was born, we were told the devastating news that our baby had Hypoplastic Left Heart Syndrome (HLHS). Opting for the surgical route, my husband Phil, my son Nicholas and I headed to Edmonton to await the arrival of our new addition.
Marcus arrived March 3, 2004, at 10:32 am. He weighed 8 lbs. 11 oz. After a few minutes to say welcome and we love you, off he went to the Stollery Children’s Hospital. There, Marcus was sedated with medication. Not being able to hold or cuddle him made this the longest eight days ever.
The Norwood procedure
On March 11th Marcus underwent the Norwood procedure. Thankfully, it went as expected without any large setbacks. On March 18th, we finally got to hold our son for the first time. It was a little difficult with all the wires, but well worth the trouble and the wait.
Marcus developed a small blood clot, and was put on a blood thinner to help dissolve it. He also received antibiotics to avoid infection. On March 28th he was air transported back to Winnipeg to the Neonatal Intensive Care Unit at Children’s Hospital. It was there that he tried a bottle and started to nurse. We learned how to insert an NG tube for supplementing Marcus’s feeding and how to give him needles to administer his medication.
From home to hospital, and home again
On April 19th Marcus came home. It is amazing how much joy can be found in bringing home your baby for the first time. Our newfound joy was momentarily lost on April 23rd at his first heart check up. We found out that Marcus was in heart failure due to a leaky tricuspid valve. With the reassurance of the wonderful staff at the Variety Children’s Heart Centre, we were once again free to go home, with one added medication.
We continued with checkups until Marcus’ heart catheterization on July 5th. This was a very trying and emotional day for us, as we did not want our son to have to go into another surgery room. I truly believe Marcus did better than we did.
On August 5th, Marcus was back in Edmonton for the Glenn procedure. Thankfully, Dr. Ross decided there was no need to fix a tricuspid valve that is still leaking, although it may need repairing in the future. With a much quicker recovery time and a few minor setbacks like a collapsed lung, Marcus was back at home in Winnipeg a week later to continue his recovery.
With the help of the heart centre, child development clinic, occupational and physiotherapy, nutritionist, and feeding clinic in Winnipeg, Marcus is growing up to live a happy and healthy life. Although he has been through a lot in his first year, Marcus can still muster a few smiles for you, (unless you are trying to take his blood pressure).
It is amazing what science and medicine can do. We are so thankful the technology was there to save our son, and give him a great life.
One of the blessings of Marcus’ heart defect is the great people and friends we have met. With all the great support he receives, we know Marcus will be able to tell his own story, and maybe help some other children as the years go by.
