by Rebecca Green
I'm not the parent, I'm the grandparent, of a beautiful little boy with Hypoplastic Left Heart Syndrome. At age 2 days he had surgery to correct his T/E fistula. He had his Norwood procedure at 3 days old in the afternoon. The doctors is said he had about 60% chance of surviving surgery. He was also born with severe cleft lip/cleft palate.
They didn't give us much hope of his surviving the night when he came out of surgery on Thursday (6/12). They just don't know Dyallon! Not only did he survive that night, and those that have followed, but on Saturday night when his mom & I went in to say goodnight, as soon as he heard me say his name his eyes popped open and he grabbed my finger. I really don't know who was more excited, me or his mom!
Dyallon lost his courageous battle on Thursday, June 19th at 1209PM. His parents, Sam and Beth, were holding him, surrounded by his grandparents.
Following Dyallon's heart surgery, he was placed on ECMO, due to the fact that the doctors were unable to remove him from the bypass machine. After several days, as his condition stabilized (he even opened his eyes and squeezed my finger when I spoke to him!), the doctors and nurses attempted to wean him from the ECMO. They couldn't. But no one gave up trying.
However, by Wednesday night it was evident that a decision would have to be made soon. A meeting with his doctors was planned for Thursday. When everyone got to the hospital Thursday morning, the doctors had bad news for us. It seems that during the night Dyallon had suffered a massive (grade III-IV) intercranial bleed, due to the blood thinners he required to be on the ECMO (this normally only happens in the first 3 days - his was day 7).
His parents made the decision to try one more time to take him off ECMO. If that sweet baby had the courage and strength to survive, we would find the courage and strength to deal with the problems caused by the bleed.
It wasn't to be. His poor body just couldn't do it, so now he rests without pain or machines. We only had him for 15 days, but those were 15 of the most special days any of us have ever experienced!
We all want to thank everyone who sent their good thoughts and prayers. It is our wish that no baby, no family ever have to go through this ordeal. Medical advances are made every day. Let them continue. Don't ever think that Dyallon or any of these other special angels lived in vain.
There is a photo in our livingroom of Don and I in old-time costumes. Don is a Civil War
cavalryman (a Rebel, of course), and I'm a sort of floozy.
It was taken during our courting days.
When Martin looks at the photo he always asks, "Where me?"
I tell him that, back then, he was just a twinkle.
I don't remember where I learned that phrase. Perhaps it was from my own parents, when I asked the
same type of question.
Whatever the case, Martine and Roger became more than twinkles in our eyes.
We looked forward to their arrivals so much that we gave them pet names when I was pregnant.
Martin was It Bit (who knows -- that was Don's pick) and Roger was Sweet Pea (my choice).
This spring, just as we had looked forward to the arrivals of our two sons not long ago, we were looking forward to the arrival
of our grand-child.
Don's son, Sam, and Sam's wife Beth, knew from a sonogram that they would be having a little boy.
They named him Dyallon Samuel, and he was due to arrive in mid-June.
When he arrive on June 4, though, he couldn't stay long.
Dyallon had several physical problems. Some were correctable by surgery. His heart, though, was a major problem.
For about a week, things seemed to look positive. As my mother said, a person always holds hope.
Then, though, the situation turned and Don flew to Dallas.
He was graced with the privilege of holding Dyallon and telling him that we love him.
I told Martin that his Daddy had gone to Dallas to help Sam and Beth take care of baby Dyallon.
"Baby sick?" Martin asked Don on the phone, "Yes. The baby is very sick." Don answered.
When something dies, we try to explain to Martin and Roger that its body is broken, and its soul has gone to heaven.
Dyallon's body was broken. As Don said, Dyallon knew it, and God knew it. His soul went to heaven June 19.
We are proud of his parents. They tried to face the situation with love for their son.
I looked at the starts the night before Dyallon died, and I knew that, with his passing, he would return to being
a twinkle.
We have so few momentos of his life. I've asked a friend to make us a windchime, with a heart, cherubs, and his initial,
so that when we hear the music of the chimes, we can think of him.
Dyallon will be with us in the stars that shine, and in the wind that blows, and that will have to be enough.
The Family of Dyallon Samuel Thorp
Parents: Sam and Beth Thorp
Grandparents: Barry and Rebecca Green, Don and Lori Thorp, Diana Tople
Great-Grandparents: Emmett McConathy, Billie Thorp
Great-Great-Grandmother: Marguerite Bartlett
Many, many loving aunts, uncles, cousins, relatives and friends
Rebecca Green
Transplant Immunology Lab
Baylor University Medical Center
3500 Gaston Avenue
Dallas, TX 75246
(214) 820-2119-office
(214) 820-6384-fax
rn.green@baylordallas.edu