Babies born with this condition have chest cavities that are too narrow to support normal lung development. They need a respirator in order to breathe. The condition is fatal, hence the term "thanatophoric" or "death-bearing". Most thanatophoric dwarfs die at birth. My son Eric lived for 100 days. February 18 marked the 29th anniversary of his death.
Eric lived his entire life out at the neonatal intensive care unit (NICU) of Wilmington Medical Center (now Christiana Care of Delaware). I've written about him here, in an article published by Delaware Medical Journal in 1985. The article focused on how parents cope with an infant born with a fatal condition -- an infant seemingly "born to die." In it I conclude:
No-one knew from the outset how long [Eric] would live, so the decision to live in hope and not in fear meant, for Eric, a commitment to his development and to the kind of interpersonal interaction that can only benefit an infant. Length of life cannot be used as a measure of the depth of experience of that life. Eric had a very difficult life, but he experienced love and he carried on the very human struggle for survival in a body that ultimately failed him, as our bodies will ultimately fail us.Samuel Mann's parents also choose to love their son and support his development with all their strength. Loving interaction has proven an amazing boon to Samuel.
Our loving interaction with him was consistent with our view of the parents' role in the lives of their children. While allowing for the special limitations of this infant's life, we were able to use the same parental model in dealing with Eric, to his and our benefit.
Samuel is now five years old! He is one of six surviving thanatophoric dwarfs world-wide. Samuel is at home, enjoying a life with physical restrictions, but he is mobile within his limitations, he eats, he laughs (here he is at age three with his belly laugh) and, wonder of wonders, he can spend up to ten hours off his respirator, breathing on his own. This is amazing!
Read what his mom Evelyn reports. (Be sure to read her "One last story". It relates a casual encounter that everyone who has dealt with an intense situation will recognize):
Saturday, February 19, 2011 10:32 AM, CST
We had a note worthy event last weekend that I thought I would share.
Here are two posts that I put on facebook last weekend:
Post 1: Samuel has been off the ventilator for 8 and a half hours now!!! Praise the Lord!!
Post 2: Ok, we thought it was time to put Samuel back on the vent after 9 hours. So we put him back on and for the next ten minutes he tried to take it off again. So now he is off the vent for ten hours by his choice!! Can you say WOW!!
He was off the ventilator until we put him to bed. The next day, Samuel did great. I thought it may have been too taxing for him but he did great!! He hasn't done that since. He has ways of letting us know that he wants his ventilator back : - ). We also make sure he is on the ventilator when he is sleeping.
So, this morning, Samuel wakes me up by pulling his trach out. (So the ventilator is working but no air is going in him because he pulled the tube out that goes into his neck.) I put it back in. He did it again. And he kept trying. So, now my tactic is to distract him so he can not "play" this way. He is happily bouncing in his new bouncer (this is his 6th bouncer in 5 years---he wore all the others out) and looking in the mirror at the handsome boy looking back at him. LOL!!
So the adventure of raising our sweet special boy continues. I am blessed to tears by the love of our church family and how they love on him every Sunday. The sunday before superbowl, Samuel was proudly tossing his toys on the floor to show off for four wonderful ladies who were loving on him. When he threw the toy the third time, one lady raised her arms in the air and said, "Touchdown, Samuel". I had tears streaming down my cheeks by their love and they joy they received from Samuel. It truly warmed my heart.
One last story. I was at the store returning a sweet gift we had received for Samuel for Christmas. It was long sleeves and a long pants. As these won't fit Samuel, we were exchanging them for something that had short sleeves. The sweet sales lady said, "Was there anything wrong with the items we were returning?" I had a split second to try to figure out how I was going to answer her question. Would I explain the special needs our son has or simply tell her the clothes didn't fit our son. So, instead of these fine options, I blurted out, "Our son is a dwarf." The nice sales girl didn't say a word and politely exchanged the items.
It was an odd moment for me. How do I share about sweet Sameul in 30 seconds or less. I want people to know that God does miracles today. Our son is a living breathing amazing work of God. My husband says he is God's alternate construction. I want people to know how rare our son is...the only survivor of 6 total worldwide that I know of. Thus showing more clearly the miracle of our son. I want people to see the beauty of our son's smile and the joy he exudes without saying a word. I want people to see Samuel and not his tubes and wires. I think for the most part, that is what people see because once you see his personality, the tubes and wires just melt away in the background.
I am a special needs mom and have been given an incredible gift to love on this sweet son we have been given by God as His miracle. I have an amazing husband who is the true unsung hero in this story. He wakes up for Samuel's every alarm at night and checks on him so I can get my rest. He knows that ventilator inside and out and he handles all the paperwork that goes along with a special needs child and coordinates all doctors, nurses and all therapy visits. When I prayed for a husband, God truly picked out the best one for me.
Thank you all for the beautiful comments and expressions of love that you leave in the guest book. I cherish and read each one. One day, we will have caringbridge bind them in a book for us. For now, I truly enjoy the love you share by leaving your comments. It has gotten me through many challenging days when Samuel was younger. Thank you for your continued prayers. We pray for the Lord to plant a hedge of protection around Samuel every day. We so need that. We thank you and covet your prayers.
Evelyn (Samuel's Mommy)