At 32 weeks pregnant I went to labor & delivery due to decreased fetal movement and liver pain. I didn’t think much of it, since our daughter was born healthy during an induction at 38 weeks pregnant. I just went in to be safe. After being hooked up to the fetal monitor and shortly after that being given ultrasound after ultrasound it was determined that Warin had a congenital heart defect, hydrops fetalis and other issues with his heart.
After spending the night in the hospital, we were then told that our hospital couldn’t help us, but that we could go to Boston if we wanted to. We rushed to Boston where we spent 6 days before I ultimately needed an emergency c-section due to having a rare condition called mirroring syndrome. Our son was born on January 25th at 2:13pm. He lived for 5 days.
Our son, Warin Bruce Larose went to sleep peacefully in my arms next to his daddy on January 30th around 11:53PM.
Warin had so many medical illnesses. The qualities that showed through those were his perseverance, strength, and determination to fight. There were many times where Warin showed us he was fighting and in those moments, winning.
Each time the doctors proceeded on with bad news, Warin proved them wrong. Until he couldn’t anymore. He was tired. On the night of his passing, I asked him to give me a sign. Any sign to let me know he was ready to sleep.
Less than 10 minutes later, my baby boy went into tachycardia with a heart rate of almost 300. It was in that moment we had to make the decision that it was time.
With only a conventional breathing tube and a morphine drip, his daddy got to hold him. They snuggled and Warin got lots of kisses. When my husband handed Warin to me, I decided I would hold him for a while with the breathing tube but that I ultimately wanted it out so that I could spend my baby’s last few moments snuggling with him as he was born. They kept him on the morphine drip for his comfort.
Warin Bruce fell asleep as peaceful and cozy as can be, while listening to my heart beat. I patted his bum and rubbed his back. Gave him more kisses than what anyone could possibly count. I stared at him. For hours. I stared at my baby in aw that such a little tiny human could fight such a hard battle. He truly was a warrior.
Warin has taught me more than anyone ever has. I will forever treasure the short 5 days I got to spend with my beautiful baby boy. We will think of Warin each day for the rest of our lives. Warin is resting, but will always keep us going. Our guardian angel who will protect his big sister at all times.
Once genetic testing was completed after he passed away, it was determined that he had 3q29 microdeletion which is what led to the heart conditions and ultimately, hydrops. He didn’t get this microdeletion from my husband or I which means he was just a rare case of 1 in 40,000.
We found out 3 short months after Warin passed that we are expecting.
A couple of months after that, we found out it is another baby boy. We never thought we would have three children. We decided early on in our relationship that we would have 2 kids. But we also never in a million years thought that one of our babies would be gone. We are grateful that we’ve now welcomed our third and final baby, after a nerve wracking pregnancy.
Losing Warin is the hardest thing I’ve been through, and pregnancy after that is the second hardest. I’m grateful for a community of people that are also a part of the worst club ever.
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