2020 Team 6 - Team Ethan
Our precious baby boy, Ethan William Henry Cohen, was born on February 7th, 2018 weighing 4 lbs 9 oz. Our first child, and the first grandchild on both sides. He was a little dude, who arrived 4 weeks early at 36 weeks via emergency induction due to lack of growth. Ethan’s growth had slowed down starting in the third trimester but the doctors assured us that everything would be fine, that he would just be a small baby.
We were filled with such joy, but the emotions quickly turned to fear and concern. Immediately, the doctors noticed a number of congenital abnormalities, very poor muscle tone, and he lacked several innate reflexes, one of which was the ability to suck and swallow. The genetics team arrived a few hours after he was born and began to assess the situation. Tests needed to be run as there was suspicion of a genetic syndrome. Ethan was whisked away to undergo a brain ultrasound and lots of bloodwork.
While waiting for answers, Ethan was admitted to the NICU at Mount Sinai. It was a stressful few weeks, but we stayed right by Ethan’s side, trying to teach him to feed and keeping him comfortable. We focused on bonding with our baby, trying to ignore all the wires, tubes, and beeping in the sterile environment of the hospital. We were so sure that everything would be fine and that he just needed some extra time.
When Ethan was about 3 weeks old, we got the call. The test results came back and he had been diagnosed with Smith-Lemli-Opitz Syndrome (SLOS), an extremely rare inherited genetic metabolic disorder. A life-limiting disorder, SLOS affects organ function, causes severe intellectual and physical disability, with no cure and no treatment. Our lives came crashing down.
Ethan’s health continued to decline over the next week and there was no sign of him getting better. The last thing we wanted for our boy was to endure a shortened life filled with pain and we felt so helpless. It was at this point that we had a meeting with Ethan’s neonatologist, geneticist, nurses, and the pediatric palliative care team from SickKids. This was the first time we heard of Emily’s House.
It was the most difficult decision of our lives to move to Emily’s House, but we knew it was the best thing for our sweet little Ethan. Once we moved to Emily’s House, we were able to make wonderful memories with our son. We got the opportunity to actually live in a home-like environment with him. Little things that most would take for granted were monumental moments for us. This included being able to take Ethan outside for a walk in the park, playing with toys, eating at the kitchen table with him, cuddling with him in bed, and celebrating the holidays. Ethan got to celebrate both Easter and Passover with our families. He was also able to meet some puppies and listen to his favourite songs, especially ‘Baby Beluga’, during music therapy. We can’t say enough about the staff that work there who made our stay so memorable with Ethan. They not only helped us with the medical aspects of Ethan’s care but also made sure that we were taken care of as well. Over our time at Emily’s House we also had the privilege to observe first-hand the incredible work they do for children with complex medical needs and their families. Every child is made to feel so loved and special. It truly takes an extraordinary type of person to work and/or volunteer in paediatric palliative care.
After 5 weeks of living at Emily’s House, Ethan took his last breath and passed away by our side. Although his time with us was short, we know he is now at peace, safe from any suffering. It’s hard to believe how much we learned from this special little boy and the unconditional love that one can have for their children. Although these were some very dark times in our lives, there were still rays of sunshine creeping through the clouds. And that ray of sunshine was our son. Ethan will be in our hearts forever.