Haytham Doing Better Than Ever Following Liver Transplant From Altruistic Donor

Editor’s note: The interview with Haytham’s family for this article was done with the help of a certified medical Arabic interpreter on Lurie Children’s staff. All quotes and information from the family were shared in Arabic and translated. 

ملاحظة المحرر: تم إجراء المقابلة مع عائلة هيثم من أجل هذا المقال بمساعدة مترجم طبي عربي معتمد من طاقم عمل لوري للأطفال. تمت مشاركة جميع الاقتباسات والمعلومات من العائلة باللغة العربية وترجمتها إلى اللغة الإنجليزية. لقراءة هذه القصة باللغة الإنجليزية ، الرجاء الضغط هنا.

Two-year-old Haytham has already overcome many challenges in his young life.

Shortly after his birth, he was diagnosed with glycogen storage disease type 1B, a rare and serious genetic condition in which the body is unable to store or break down a type of sugar known as glycogen. Among other complications, this condition often renders the kidney and liver unable to function properly. His mother, Soha, and father became aware shortly after his birth that he was likely to need a liver transplant when he was a little older.

“It was a very stressful time,” Soha said.

The family had recently moved to Chicago when Haytham, then about two-and-a-half months old, developed a 104-degree fever. A relative encouraged the family to visit Lurie Children’s to receive thorough and prompt care for the sick little boy.

After detailing Haytham’s condition to pediatric specialists at Lurie Children’s, the family was admitted for numerous tests and to stabilize the baby’s health with specialists in nutrition, genetics and hematology.

Because of the progressive nature of his condition, Haytham’s condition worsened after he returned home, and he had a seizure.

It was then that Dr. Joshua Baker, an expert in pediatric genetics, genomics and metabolism at Lurie Children’s suggested Haytham join the registry to receive a liver transplant. A new liver would give Haytham best chance to help manage his condition and decrease the chance of more seizures.

Hope from a Stranger

There are not enough healthy organs from deceased donors to meet the needs of all patients who need them to live or have a better quality of life, said Riccardo Superina, MD, Head of Transplant and Advanced Hepatobiliary Surgery at Ann & Robert H. Lurie Children’s Hospital of Chicago, who performed Haytham’s surgery along with a team of pediatric anesthesiologists, nurses and surgical techs.

But thanks to living donors, many more pediatric patients who require transplantation have a chance at life. Relatives of patients -- or sometimes strangers -- who are qualified and willing to donate a portion of their liver or a kidney can act as living donors to patients in need.

In Haytham’s case, none of his family members were able to be his donor. But one altruistic stranger was a match.

Lyndsey, a third-grade teacher and mom of four from the Chicago suburbs, had entered the registry months earlier to try and be a donor for her co-worker’s mother, who needed a new liver. Though not a match, Lyndsey agreed to stay on the registry.

Just a few months later, she got the call that she matched a 10-month-old child who needed the organ – Haytham.

“I said, yes, of course. My heart just went out to the family. I cannot imagine being a mom in that situation,” Lyndsey said.

Soha said she can’t overstate the incredible relief her family felt from knowing a donor was available.

“Of course, I cried. I wanted to meet her from day one,” Soha recalled.

‘Bonded Together for Life’

In December of 2021, Haytham and Lyndsey underwent their procedures. A small portion of Lyndsey’s liver was resected at Northwestern Memorial Hospital, the adult hospital across the street from Lurie Children’s. Thanks to a longstanding partnership between the two hospitals, both patients received the best possible and most age-appropriate care. Juan Caicedo, MD, helms the transplantation program’s joint effort at Northwestern Medicine.

The procedures went according to plan: Lyndsey went home five days after her procedure, while Haytham recovered for 40 days as an inpatient at Lurie Children’s.

Since his transplant, Haytham continues to be seen regularly by Lurie Children’s specialists. Today, he is more than one year from his transplant he celebrated his second birthday in February 2023.

“I am very, very grateful because everything has been normal since transplant,” Soha said.

Haytham has since caught up on many of his key milestones and is running and climbing over furniture. Last summer he began to eat on his own, a huge achievement given his previous dependence on a nasogastric (NG) tube to receive nutrition.

He loves to laugh and go outside, Soha said. “Everyone who sees him says, ‘Oh, he’s such a happy child.’ We are very grateful.”

This March, Haytham’s family met with Lyndsey for the first time at a gathering at the hospital. The families plan to meet again and to stay in touch.

‘It was a really emotional meeting,” Lyndsey said. “They were so grateful and so sweet. We are bonded together for the rest of his life.”

“I will never forget what she did for us,” Soha said. “I will never be able to pay her back for what she did for our son.”

Lyndsey hopes to encourage other healthy adults to become organ donors. For six weeks of feeling “slightly uncomfortable,” she said, she was able to transform a baby’s life. (For more information on being a living donor, click here.)

Meanwhile, reflecting her baby’s health journey, Soha has one key message for others going through a similar situation: “Never lose hope.”