To Families Facing A Diagnosis of Thanatophoric Dwarfism:
My heart’s desire is to come along side families who are given no hope. My son was not expected to live past birth; however, he lived. Six months in the hospital and five and a half years later he still lives.
It breaks my heart to see other families going through this…are they given all the options? Are they told ALL these children die…no exceptions? Are they told the diagnosis these children have is not compatible with life. Are they given no hope? I certainly was when I was pregnant with our son. I heard of a few survivors but none living past seven years of age.
Was I told that there is a child with TD that is now 25 years old! No. Was I told about another child with TD who lived to be 20 years old? No. This is what I was told:
“Do you want to take your child home?” the doctor asked.
“Yes”, we answered.
“O.K., he will need tracheostomy surgery and a g-tube put in his stomach. Then you can take him home.” the doctor replied.
We said, “O.K., let’s do it!”
We knew that they had no hope for our son. We knew they thought he was going to die.
Are parents facing the same situation (a diagnosis of TD) told about our son? There are two other families I am in contact with whose children are survivors of TD. These children can survive but how will the parents know unless someone tells them. We are willing to share our son’s story so that they will know.
You can go to Samuel’s website at www.caringbridge.org/visit/samuelmann to read my journal these last several years but what is most inspiring is to see our son’s smile in the pictures posted there.
Evelyn Mann (Samuel’s Mommy)