One Child, One Miracle, Hope Lives

One Child, One Miracle, Hope Lives

Hand in Hand
Hand in Hand

As Samuel reaches the milestone of turning ten years old, I’m so thankful for the blessings of being his mom. Each day is a gift to be opened. From the brilliant smile he gives me in the morning to the hand kiss he reaches up for when I put him to bed and the hundreds of hugs and kisses in between, I’m blessed.

Survival of my son’s condition is rare. The number of births with a diagnosis of Thanatophoric Dysplasia (TD) is 1 in 20,000; not so rare. So where is the disconnect? Why did someone name the condition a Greek word that means “death bringing” of all things? What do I tell the parents who are given the same pregnancy diagnosis I received?

The disconnect may come from past history. Once a diagnosis is determined, the medical staff research medical journals which state the condition is lethal and not compatible with life. Why use resources, time and energy when the outcome is pre-determined. Or, at least, that is the unspoken message.

{Thanatophoric dysplasia, also called thanatophoric dwarfism was discovered in 1967 by Pierre Maroteaux and his coworkers who used the Greek term “thanatophoric” meaning death-bringing.}

A Thousand Words
A Thousand Words

Based on these circumstances, what do I tell parents who contact me needing hope breathed into their situation? First, I send them a picture of our son. In this case, a picture really is worth a thousand words. How I wish I’d had a picture when I was pregnant to offer me hope.

Secondly, I share a bit of our journey. How Samuel needed help breathing at birth. At first he needed a tube to deliver oxygen and within a few weeks an amazing doctor performed a tracheostomy. Another hurtle was to transition from the hospital grade ventilator to a home ventilator. There were several up and downs in the six months he spent in the hospital which I am chronicling in my upcoming memoir.

I share that TD children have lung insufficiency requiring ventilation at birth. I have heard from other moms around the world who have told me their children didn’t get this help.

One mom wrote me from England. Her name is Sadie N Benji Cornish. Her son Leo was born on February 5th, 2008 weighing 6 pounds 4oz. Here is her story:

They (doctors) said Leo wouldn’t do good with ventilation because it would prolong his pain. I asked several times to

Leo
Baby Leo

please give him oxygen because he was struggling to breathe and they let me watch him suffering for an hour and he passed away in my arms gasping. The memories of that day haunt me, Evelyn. They wasn’t aware of the condition as well as they should have been. I wish I would of stood my ground and demanded ventilation. They asked me to abort at 22 weeks and I refused because I wanted to give him a chance. They promised me so much but by the time the day came it’s like they knew I would trust them to make the right decision. Looking back, they just gave up the second he was born. So happy I have you to talk to Evelyn. You are an angel and I’m proud to say you are a part of our life. Much love, Sadie.

My heart is for these precious children to have a chance at life. Though there can be many complications arising to hinder survival, miracles still happen. This is what I clung to during the many months of my son’s hospital stay. This is the hope I wish to pass on.

By Evelyn Mann

Author, A Miracle In My Living Room

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2 Thoughts on One Child, One Miracle, Hope Lives

  1. What a heartbreaking story! I feel so blessed to be a part of Samuel’s journey!

    Reply

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