Hope Lives Here

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.

With hope,

Evelyn Mann (Samuel’s Mommy)

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5 thoughts on “Hope Lives Here

  1. The sad thing is Samuel is one of the lucky ones. I have read stories from so many, especially in other states and especially other countries like England where Doctors/ Hospitals, once the baby has the diagnosis of TD, won’t provide the option of tracheostomy surgery or ventillation. They won’t provide any lifesaving measures. The parents aren’t even afforded the chance to keep their babies alive. Samuel is also a miracle for the care he did receive. You and Ralph and your determination and persistence in dealing with the medical establishment was awesome. 🙂

  2. i’m 8 months pregnant and my baby was diagnosed with the thanatophoric dysplasia type 1.. been doing research about this and it’s really heart warming to know that there are survivors.. i’m hoping for the best..thanks for sharing your story.,,

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