Audra, a pre-kindergarten teacher at Lexington Elementary School, and Brian, a cattle rancher had been eagerly awaiting the arrival of their second child. They already had a beautiful daughter, Merit and they knew she was going to be a wonderful big sister to the new baby. When her baby brother arrived, they were all thrilled. At first, Jhett seemed to be thriving. Then, at around four months, Audra began to notice that Jhett would nurse for a little while and then scream. They tried formula, but the screaming episodes were lasting longer, sometimes 20 minutes at a time.
“There were times,” Audra remembers, “when Jhett started to learn how to crawl that he would move halfway across the floor and then reach for me. He couldn’t make it all the way across.”
Audra spent hours scouring the internet for some answers. Then there was a more serious incident. Jhett stopped breathing again and Audra had to give her baby son CPR while a Medi-flight helicopter from Oklahoma Children’s Hospital made its way toward Lexington.
Cardiologists at Children’s told them that Jhett was suffering from ventricular tachycardia or v-tach, a fast heart rhythm that originates in one of the ventricles of the heart; a condition that can lead to sudden death. Further investigation revealed that Jhett’s heart disorder came from a genetic condition. About one in a thousand children have the disorder, but the symptoms are rarely seen because most of the kids don’t live past ten months.
Apparently just the act of nursing or sucking a bottle put such a strain on Jhett’s heart that he would cry in pain. “I found it ironic that something that was supposed to come so natural to him, nursing, was actually making his condition worse,” Audra says.
Audra painfully recalls that she couldn’t even touch Jhett without him going into v-tach. “They had to put him in a medically-induced coma to keep him calm and stable and keep him alive.”
They gave Audra and Brian two difficult options. They could put a defibrillator in his chest to automatically shock his heart back into a normal rhythm, or wait for a heart transplant.
“I was shocked. I said, ‘Are you kidding me?' I had no idea it was that severe. It was just a total slap in the face.”
The doctors arranged for Jhett’s transfer to Texas Children’s Hospital in Houston, a center that frequently deals with problems like Jhett’s. However, just getting Jhett from the hospital bed to a gurney was risky. As he was being moved his heart stopped. “He had no pulse. They resuscitated him and shocked him several times,” Audra recalls. “I can’t tell you how many times that kid was shocked and he had no brain damage and no damage to any of his other organs.”
Jhett was taken to a plane that had been fully outfitted as an airborne pediatric intensive care unit, and flown to Houston where it was decided that Jhett’s heart would need help pumping while he waited for a donor heart. They ordered a fairly new piece of technology from Germany called the Berlin Heart, a mechanical device that works by helping the right ventricle of the heart to pump blood to the lungs and the left ventricle to pump blood to the body. While they waited for the Berlin Heart to arrived, Jhett was connected to a machine that ran the blood from his body into a device that removed carbon dioxide from his blood and added oxygen before it returned the blood to his body. When the Berlin Heart arrived it was attached to Jhett’s left ventricle. It kept Jhett alive while he was still comatose and waiting for a human heart.
Audra began keeping an online CarePage journal to keep family and friends informed about Jhett.
Posted Nov 17, 2007 2:16pm
i spoke with our transplant coordinator today. they have a meeting on monday at 8 a.m. to "tell" the board jhett needs a heart- not to ask them. he will then be placed on the transplant list in category 1A which is the top of the list (thank you God).
Two days later, Audra and Brian got great news, and Audra couldn’t wait to tell everyone.
Posted Nov 19, 2007 5:23pm
Jhett is officially on the transplant list as of this morning! He is doing great- his drs. are very pleased with his strength and stability. His nurses talk about how beautiful he is- and that his eyelashes are just too pretty for a boy! I cannot wait for them to see his personality!
Another challenge lay ahead before Jhett could receive a new heart though. They needed to bring Jhett out of his coma before they could do a heart transplant. Doing that, they said would also be risky. But Audra recalls in her journal that they were able to partially wake Jhett up.
Posted Nov 27, 2007 5:26pm
Oh My Goodness! This morning was amazing...Dr. Morales met me in the hallway and escorted me into jhett's room. Jhett was propped up in his bed, Dr. Morales tapped him on the foot and said, "Hey, Jhett" and his eyes were wide open!! I was in complete shock. This is the closest i have seen my son to being awake in almost an entire month. He heard my voice and looked over at me, i cannot tell you in words how good that felt to see him focusing on me.
Even though Jhett was no longer fully in a coma, he became more fragile day by day. After nine excruciating days on the mechanical heart, Audra says the surgeon came in and told her that the other side of Jhett’s heart was beginning to fail, and they were concerned about him surviving another surgery.
“I was thinking, ‘My God, we’ve come this far, please don’t let him die’.”
Audra went downstairs to talk to her husband about the difficult decisions that might be ahead for them, and less than an hour later her cell phone rang. It was the transplant coordinator. “When I answered, she asked, ‘What are you doing?’ I told them that I was eating. ‘Have you swallowed?’ the voice on the other end said. ‘We have a donor heart for Jhett!’”
Audra remembers hurrying up to the floor where Jhett’s room was to find the nurses cheering as she walked down the hallway. “Everyone was hugging and crying. They were just so happy for us.”
Jhett was in surgery for several hours, but at 2:05 in the morning, Audra received another call on her cell phone. “They told me that Jhett’s new heart had just taken its first beat.”
Before the surgery, Audra remembers, Jhett’s room was full of IV poles, tubes running in and out of his tiny body, and constantly noisy machines that were monitoring everything. After his transplant, there was a different scene in Jhett’s room. “A lot of the medicines were gone, he was wrapped up in a blanket and he looked so calm and peaceful.”
The only real sound was the rhythmic, reassuring sound on the monitor by his bed of his new heart beating.
Posted Dec 2, 2007 1:37pm
pray for jhett. he still needs your prayers for healing and strength. we knew it wasn't all going to be fixed right away, he still has a long road ahead, but we are so much better off than we were when we arrived!! he is ALIVE and on his way to recovery!! he is such a sweet and strong boy.
Audra and Brian know nothing about Jhett’s donor, or the family that suffered such great loss. But, Audra did write a letter to them, which the transplant center and the organ recovery organization sent on to them.
Dear Donor Family,
This letter does not come easy. Just a few months ago both our worlds were turned upside down and will never be the same. But yet, somehow, in the middle of your intense grief, through your grace and generosity, you made a decision that saved my son’s life. Because of you, he received the most generous gift of all- a heart from someone unknown- yet more special than I could ever imagine. To say a mere thank you seems so insufficient.
I hope that as you read this, you find the smallest bit of comfort in knowing that your decision has helped many others. And because of your decision you have also made my family, friends and even myself become more aware of organ donation. Your kindness has touched more lives than you will ever know.
Please know there is not a day that goes by that I don’t think of you and say thank you.
Audra
A Grateful Recipient’s mother
“It was bittersweet for me and I remember calling my preacher and asked him to have everyone pray for the donor family, because while they were grieving, I was rejoicing.”
Audra says Jhett’s successful heart transplant had everything to do with God and his timing. “I had so many people tell me that they couldn’t remember how long it had been since they had prayed, until Jhett got sick.”
Posted Dec 7, 2007 11:30am
my child is now being referred to by all the drs. as "the miracle baby"... i am quick to respond with, my prayers are being answered! they all agree. today, jhett has only 3 meds, no chest tubes, he ate another full jar of baby food. he is sitting up, in a bouncy chair, he is just a completely different child. i am so excited to see how responds to really feeling good for the first time in his life.…
Jhett spends his days, laughing, going fast and playing with his big sister. Audra and Brian know what a gift they’ve been given. Their son is well because of the generosity of a hurting family.
“That was all he needed, a new heart,” says Audra.
