What’s it like to parent a child with Thanatophoric-Dysplaysia Dwarfism?
Samuel’s Story ~ By Evelyn
I am very familiar with receiving a negative-pregnancy diagnosis.
In the year of 2005 I was delightedly pregnant and all was well until we went to the 20-week-ultrasound.
Over the next month we heard things like “terminal,” “not compatible with life” and “the child will not live past birth”.
But God … one of my favorite two word sentences, had other plans — a miracle in the making.
Our sweet son was born on Aug. 2, 2005. I did not hear him cry as I prayed to but instead he was whisked off to the Neo-natal intensive care unit where he would make his home for six weeks.
There were many touch-and-go moments there. Samuel was transferred to the pediatric intensive care unit where he would live until he was six-months old.
When he was finally released to our care at home, we found out later that the nurses had a bet that Samuel would be back in the hospital with in days, if not that same day.
But God … our son came home to 24-hour-nursing care.
We celebrated every month like a birthday because we were told to count his life in months, not years.
Then he turned a year old. We had a HUGE birthday party. For his 18-month-birthday, I baked him a cake — I am not a baker so this was feat!
Our precious child celebrated his 6th birthday last August and he will be turning 7 this year.
But God … we are so thankful. Samuel was diagnosis with Thanatophoric- Dysplaysia Dwarfism. Thanatophoric means “death bringing” in greek.
My son is only one of six survivors of his diagnosis world wide.
After going through this journey, it is my hearts desire to glorify God and to pass on HOPE to other mothers given a negative pregnancy diagnosis. www.caringbridge.org/visit/samuelmann.
— Evelyn, Samuel’s mommy