“We already loved this little being at 16 weeks. We could already feel him moving, and we wanted a future for him,” recalls Thomas's mother, Jessica.
A terrifying diagnosis
Survival rate: 15%. Jessica and Jean-Philip, Thomas' parents, were shocked by this devastating news. In the 12th week of pregnancy, during an ultrasound at the hospital in Rouyn-Noranda, a nuchal translucency test revealed an anomaly. Blood tests and further investigations had to be performed. The couple was referred to CHU Sainte-Justine in Montreal, more than six hours from home.
The discovery of a serious malformation
Thomas had a diaphragmatic hernia. Part of his diaphragm was missing, and his organs had moved up into his chest, compressing his heart and lungs. Neonatal hospitalization was vital as soon as he was born. The chances of survival were slim, but Jessica and Jean-Philip were ready to support their son in the fight for his life.
A battle waged while still in the womb
The following weeks were fraught with uncertainty. At 28 weeks' gestation, an intra-uterine operation was attempted to increase their baby's respiratory capacity. It failed. The wait became unbearable for Jessica and Jean-Philip, with each day bringing both worry and hope.
Thomas' first weeks
Thomas was born at 37 weeks and was immediately admitted to intensive care. At just six days old, he underwent his first surgery to reposition his organs and allow his lungs to develop. Although the operation went well, two holes were discovered in his heart, inoperable because of his fragile lung condition. A few days later, a second surgery had to be performed to relieve his intestines.
A long stay in the hospital
For the first eight weeks of his life, Thomas had to stay intubated, unable to breathe on his own. He underwent his third operation in his first 100 days of life, after a complication. “When we were in the hospital rooms, we were living in uncertainty. It was easy to recognize the little Enfant Soleil logo. Every time we saw it, it always made us smile a little and was a balm on our heart,” confides Jean-Philip.
Home at last
After 193 days at Sainte-Justine, Thomas was transferred to the Rouyn-Noranda hospital, and 68 days later, he finally went home for the first time. He was almost nine months old. Since then, Thomas sees his pediatrician every month for a follow-up. He also has to visit CHU Sainte-Justine every three months for his severe pulmonary hypertension, significant muscle weakness, and global developmental delay.
A message of hope
Thomas' smile lights up every moment. For Jessica and Jean-Philip, their son is a teacher of life. “We're happy we believed in him and are blessed to spend time with this little guy. We're lucky that he chose us and that we get to learn about life by his side every day,” says Jessica. She concludes: “You make a difference. Every donation gives hope: the hope to carry on and believe in a brighter future.”
– Jessica Houle, Jean-Philip Comtois
Thomas, teacher of life
Jessica and Jean-Philip tell us about Thomas' journey from their regional hospital to a large pediatric centre.
