Grant and Rebecca Watton were told that their baby’s heart couldn’t be seen well enough at their 19 week ultrasound. A few weeks later, another ultrasound showed that the baby had a severe heart defect.
The medical team,along with the Wattons, outlined a plan. Doctors advised Grant and Rebecca to consider quality of life while making decisions for their baby’s future. Grant and Rebecca decided to go ahead with the pregnancy and that each moment, both during pregnancy and afterwards, was a gift.
The baby’s diagnosis also changed. She had originally been diagnosed with Severe Unbalanced AVSD, but her diagnosis changed to Hypoplastic Left Heart Syndrome (HLH), meaning the left side of the baby’s heart was underdeveloped.
Grant and Rebecca were told that surgeries for HLH would be palliative in nature and that a transplant would not be an option in their case.
On October 5, 2009, Rebecca’s induction date, a room became available at RMHNA. The Wattons checked in, dropped their bags and immediately went to the Stollery. Oksanah was delivered at 1:30 pm on October 6 at the Royal Alexandra Hospital and was then transferred to the Stollery Children’s Hospital.
The couple came home to RMHNA after Rebecca was discharged and wondered why they didn’t come sooner. They found it to be beautiful, professional and exceptional in its clean and comfortable home environment for families with sick children.
Oksanah’s first surgery was a Norwood procedure as planned and it was a success. Six weeks after arriving home, Oksanah was having trouble breathing. Doctors in Cold Lake found that her oxygen saturations were low and that Oksanah was in heart failure.
Doctors found that her valve was leaky and her heart had enlarged from the extra strain. She was put on oxygen and medications. Oksanah needed a valve repair surgery called a Glenn procedure, but babies have to be a minimum weight and four months old to qualify. She didn’t fit the criteria, nor was she able to be on the transplant list for a new heart. It was time to wait and hope.
RMHNA presented a unique opportunity for Oksanah’s care. Dr. Ross, Oksanah’s surgeon, allowed her a two week pass at the House. This was only possible due to the proximity of RMHNA to the Stollery and because Dr. Ross knew he could count on a clean and safe environment for Oksanah at RMHNA.
In January 2010, Rebecca and Oksanah drove to the Stollery for an appointment. When they arrived at the hospital, Oksanah’s saturations were very low and her breathing was laboured. She was admitted directly to the PICU.
On January 31, surgeons reluctantly decided to proceed with the Glenn procedure. The surgery was initially successful; Oksanah came out of surgery very fragile and on ECMO watch.
Extra-Corporeal Membrane Oxygenation (ECMO) involves a machine that will take over the work of the heart and lungs until your child is able to get better and do this work on his or her own. Shortly after that the valve repair, doctors found that didn’t take. Oksanah was put on the transplant list.
At RMHNA, Oksanah lived life as normally as possible. She had the freedom to play and be outside of her hospital bed. At the House, Oksanah created what would become a favourite game. She had a toy harmonica that she loved to play.
The rules of ‘Harmonica Clap’ were simple: Oksanah would play the harmonica and the audience was expected to clap. Oksanah would light up with excitement as everyone cheered for her.
On November 10 Oksanah finally received her new heart. The transplant was a success. She celebrated by being the very first visitor to the RMHNA Magic Room.
During a checkup, Oksanah had a cold and there were some changes noted on her ECHO. Doctors scheduled an emergency trip to the cath lab to test for rejection. Oksanah coded on the table following the procedure. Grant and Rebecca were in the waiting room, heard the code and knew that their little girl was in trouble. There was only one option: Oksanah needed another new heart.
On September 3 Oksanah’s heart arrived. During transplant, the mystery infection plaguing her was solved. The first transplanted heart had developed a clot which became infected. She had no chance of recovery, even with antibiotics. The timing of her new heart was a miracle.
The journey to a new normal two years later is still tough. Being away from the comforts and community of Ronald McDonald House® Northern Alberta was a big change; it was home for Oksanah.
Although Oksanah received a second heart, her body is still in the process of rejecting the first transplanted heart. This is new territory for the medical world. She continues to have annual checkups to watch blood flow, narrowing, rejection and antibodies.
The Wattons choose to embrace the good moments and leave the bad ones behind. On July 16, 2013 the Wattons welcomed Osric, Oksanah’s baby brother.