Lance Louis was my second born, but fourth pregnancy. His older brother Liam Winston was three on his birthday, and SO excited to meet “his” baby.
When Lance died just 18 hours after he was born, we were all in shock.
Two miscarriages at 7 & 8 weeks had taken their toll, but this birth of a crying, beautiful 7 lb 10oz baby boy that had renal failure due to a bladder outlet obstruction was unimaginable.
We had all prepared ourselves for Lance to be on dialysis and in the hospital for the first two months of his life, and then to stay on dialysis until he was able to get a kidney transplant, hopefully, near or after his second birthday.
Why couldn’t he retain oxygen? This was the reason the doctors didn’t want me to see him until 11 AM, 10 hours after his birth. If I would have known, if the doctors would have known, could I have spent more time with him? Would anything have changed?
Lance Louis died in my arms, with his big brother and his dad next to him and his grandparents looking over him. Two days after his death, we found out why he died. My doctor had ordered a second (full) genetic testing a few weeks prior, Lance had Alveolar capillary dysplasia. This is a rare congenital diffuse lung disease with a 100% mortality rate.
His lungs had formed with abnormal blood vessels which caused high blood pressure and the inability to remove carbon dioxide and retain oxygen. He didn’t have a chance.
None of this could have been seen on an ultrasound or either of the 2 MRIs I had of Lance at the Cincinnati Children’s Hospital at 24 & 34 weeks of pregnancy.
I’ve struggled with not understanding why God allowed a child to be formed in my womb with so much hardship attached to him.
The only pure and truthful answer is in the Bible:
“As you do not know the path of the wind, or how the body is formed in a mother’s womb, so you cannot understand the work of God, the Maker of all things”
Ecclesiastes 11:5