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Waiting for a heart

Camden’s Amari Williams receives transplant

Posted: November 21, 2012 4:58 p.m.
Updated: November 23, 2012 5:00 a.m.
Denise Schnese/C-I

Pictured (from left to right): Dr. Carmisha Williams (Amari's mother), Amari, and MUSC Pediatric Cardiology ICU nurse Liz Lucey.

 

Camden 10-year-old Amari Williams did something Nov. 16 he hadn’t been able to do in four months: leave a Charleston hospital. Physicians discharged Amari that day after the Camden Elementary School student spent those four months in intensive care waiting for -- and getting -- a new heart.

The process for transplant is extensive and very involved. Before someone can even be put on a waiting list for a transplant, doctors must rule out any other treatment option. According to Transplant Living, a service of the United Network for Organ Sharing, the first step in receiving a transplant is to get on the Option Procurement and Transplantation Network waiting list, administered by the United Network for Organ Sharing. All transplant candidates who do not have the option of a living donor (and even some who do) usually wait for some length of time because there are not enough donor organs for all who need them.

One of Amari’s ICU pediatric nurses, Liz Lucey, said that despite Amari’s difficult wait he never once complained, always showed great strength, and was very patient.

“He is a precious, loving, intellegent, and sensitive child. He is just an angel. I loved taking care of Amari,” Lucey said. “He is a very patient, wise little 10-year-old who I think handled an overwhelming amount of change and manipulation to his body and restrictions. He handled things that adults would have terribly struggled with. He didn’t complain, he is just a wonderful little man. I was amazed with what he taught me. It was incredible what he went through and how well he managed the circumstances that he was faced with.”

Amari’s mother, Dr. Camisha Williams, talked about the wait.

“Getting a heart for Amari didn’t happen as quickly as we had hoped. We tried to make everything as normal as possible. We never talked about dying or transplants. There were certain words that were off limits. I told him that his heart is sick and that he needed a new one,” Williams said.

The first sign

The need for a transplant became apparent some six months ago when Amari’s feet began to swell. According to Williams, Amari had been under the care of a local pediatrician, but it was an urgent care physician who referred the family to Palmetto Health Richland.

I said to my husband, “take Belle to my aunt” and I just left my car at the doctor’s office and went to the hospital with Amari,” Williams recalled; Belle is Amari’s younger sister.

After tests at Palmetto Richland, doctors determined that Amari should be transferred to the Medical University of South Carolina’s (MUSC) Children’s Hospital.

Williams said that some time after Amari was admitted to the hospital in Charleston, the doctors diagnosed him with dilated cardiomyopathy -- a condition in which the heart becomes weakened and enlarged and cannot pump blood efficiently. The condition can be caused by a viral infection and lead to heart failure. Williams said Amari’s condition may have likely stemmed from a case of pneumonia he had earlier in the year.

MUSC doctors attempted to treat Amari with intravenous medications and a pacemaker, but the pacemaker did not work well for him. Finally, the decision was made to use a Berlin Heart device until a transplant would become available.

MUSC Director of Pediatric Advanced Heart Failure and Heart Transplant Dr. Andrew Savage explained why the device was used in Amari’s case.

“The Berlin Heart is what is termed a ventricular assist device,” Savage said. “It is used when a heart can no longer work on its own despite maximal management. Amari was in our ICU being supported by intravenous medications that encourage the heart to squeeze. However, he still had signs of end stage heart failure and was at high risk of dying from this. Our two current options are the Berlin Heart or ECMO (Extracorporeal Membrane Oxygenation) to support patients. ECMO was our only tool for years. However, ECMO requires you to be kept on the breathing machine, fed by a tube, and kept still in a bed (medically sedated). In addition it carries a very high risk of bleeding and stroke and most patients do not survive more than a month. Conversely, patients on the Berlin Heart can breathe on their own, eat on their own and undergo physical rehab. This allows them to be in the best possible shape for surgery and recover quickly after the surgery … like Amari.”

Savage is enthusiastic about the new technology but admits the use of the Berlin Heart is not without risk.

“There is still a large risk for these patients,” he said; specially, a 20 percent change of a stroke.

Taking care of Amari

Williams said that after the Berlin Heart surgery her son was asleep for about seven days, totally sedated and dependent on his nurses for care.

Amari’s ICU nurse described what it was like taking care of Amari while on the device.

“Since the time that I have been with the PC (Pediatric Cardiology) unit here, which is about five years, they have used the Berlin Heart. It is a bridge to, typically, a transplant … but it is not without risk because you have to monitor blood coagulation,” Lucey said. “This means that you have to take medication so that your blood levels stay in a very specific range to prevent clotting. With Amari, we had a pretty difficult time balancing that and I think that he ended up having to have his (external pumping device) replaced four times because there were clots that formed within the external valve.”

Dr. Savage said there have been recent developments surrounding the use of the Berlin Heart.

“This is an exciting time for Ventricular Assist Devices. The Berlin Heart was only approved in January (by the FDA for pediatric use). We were lucky to be one of the centers that had an exemption to put them in prior to approval,” Savage said.

He also pointed out how Amari’s case was unique.

“One of the more unique aspects of Amari’s transplant was his management prior to transplant. Amari developed antibodies to potential donors after receiving blood transfusions during his surgery to place the ventricular assist device,” he said.

Savage said that meant Amari’s body would have had a reaction and immediately rejected a heart from those donors. He said that in October, Amari’s antibodies had grown to the point of rejecting 98 percent of potential donors.

“After discussion with our immunologists, pharmacists, kidney transplant doctors and our team we decided to use a cancer medication that can help reduce these antibodies. This has previously been prescribed in adult heart transplant patients but not in pediatric heart transplant patients,” Savage said. “We knew it would be a very long time for Amari to get a heart so, after a long discussion with the whole team and the parents, we decided to try it … and it worked! His antibodies decreased from 98 percent to 60 percent. A few weeks later we got a heart which was a perfect match.”

Amari’s mother recalled the experience of learning a new heart was ready for Amari.

“He has just waited so long and so patiently that I was elated and began to cry. It was very emotional. Even while he was in the OR, my husband and I were just so thankful to God that a heart had come,” Williams said; she told the doctor, “I’m going to be able to take my baby home.”

‘All the difference’

Williams was complimentary about the care her son has received at MUSC.

“I knew that the doctors would only use a heart that was right for Amari,” she said.

Those invoved in Amari’s treatment include a broad list of medical professionals: surgeons, anesthesiologists, perfusionists (a specialist who uses heart-lung machines during cardiac surgeries), nurses, case workers, coordinators, pilots, cardiac intensivists, immunologists, pharmacists and respiratory therapists all had a part to play.

It not only takes a large team of medical experts to have an outcome like Amari’s but also solid family support. Both Savage and Lucey noted that Amari’s parents have been with him every step of the way.

Lucey said that Amari’s mom was with him as much as physically possible.

“She was in his room at 5 o’clock in the morning and sometimes earlier when he would wake up. The rule was that she would stay, be called if he had difficulties and stay until he fell asleep which could be midnight, 1 o’clock,” Lucey said. “So, she and the family were a big part of Amari’s care. I truly believe that their commitment to be with him made all the difference in his recovery.”

Savage agreed.

“I also cannot say enough about his parents. They have been rocks. They have been with him at every step and tried to make his life as normal as possible,” he said.

Although he has been officially discharged from the hospital, Amari will remain in the Charleston area for a while so that he can be monitored by MUSC doctors on a regular basis for signs of rejection. However, he hopes to be home for Christmas to celebrate the holiday with all of his family members -- including his sister Belle, who has stayed with Williams’ aunt the entire time.

Amari’s hospital stay is documented on the Amari Hope for Healing Hearts Foundation’s Facebook page where more than 480 individuals have been watching his progress. Kershaw County Council also proclaimed his birthday, Oct. 13, “Amari Williams’ Got Heart Day.” The Williams’ family has been selling “Got Heart” t-shirts to help offset medical costs. To date, they have sold approximately 700 shirts.

 

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