New Liver = New Life for COTA Kid Emily … Thanks to Aunt Charmaine
July 1, 2024 — July will be a month of celebrations for COTA’s Hawkins Family of Ohio. When our nation pauses on July 4th to commemorate our independence and recognize those who protect our freedom, COTA Mom Ariane Hawkins, a U.S. Army veteran, will be one of those we salute. Then later in the month on July 26th, many will celebrate National Aunts and Uncles Day – a time when families are encouraged to reach out and acknowledge this special relationship. The Hawkins family will be celebrating Aunt Charmaine who donated a portion of her liver to niece, COTA Kid Emily, and gave her a second chance at life.
Emily’s need for a liver transplant became apparent as soon as she was born in September 2013. She was a small, three-pound, eight-ounce full-term baby at birth so the medical team knew after her first NICU lab draw that something was not right with her liver panel. In a few short weeks after her birth, Emily was diagnosed with Biliary Atresia (BA), which is a rare disease where the liver’s bile ducts are damaged. She underwent her first abdominal surgery, a Kasai procedure, at five weeks old. This procedure can delay the need for a liver transplant. In Emily’s case, BA caused scarring (cirrhosis) of the liver which resulted in the need for a liver transplant – but not until she reached nine years old.
In February 2015, when Emily was about 18 months old, Ariane launched a Facebook group called Emily’s Liver. Her first post told the family’s initial followers that a month before, Emily had a normal checkup with her liver specialist. Ariane said everything was looking great … no organ swelling, a happy demeanor and somewhat regular bloodwork. But there were several other test results during that visit that prompted the doctor to move Emily’s care to the UPMC Children’s Hospital of Pittsburgh’s liver transplant team.
In June 2015, Ariane had good news to share with their Facebook followers. She wrote, “Emily had her appointment today and for the first time … I can say it was completely uneventful. Her numbers were good enough we were able to reduce her vitamin supplement. Liver enzymes are only slightly up. She is 21 pounds and 32 inches long and is doing well. The doctor does not want to see us for another six months – our longest stretch. I hope not to post for a while. In the Army, we would often fall into a false comfort zone waiting for the next scary and big event to happen. I have that feeling now, but I am going to forget for a bit and enjoy the summer.”
Two years later, Ariane updated the group. “Hi all! Have not had to fire up this group for a while which has been wonderful. But we are here now with a potential GI bleed. Emily is holding her own, but has had fevers and bloody stools.” And a few days later, “Going home … again! Everything looks good for now.”
At the end of March 2018, she wrote: “It’s been almost a year since our last admission to the hospital, so this has been the longest stretch out of the hospital since birth. But we are here again for a GI virus. A big thank you to our close friends and family helping out / visiting / checking in on us when the world gets flipped a bit.” Then in July 2018, she updated, “Welcome new members! I’m going to do an update since it’s been a while. Emily sees her liver doctor every six months at Nationwide Children’s Hospital, and she sees the transplant team at Children’s Hospital of Pittsburgh annually. At this point Emily is currently not listed for transplant. Her doctors are happy with her growth, weight and abilities.”
In August 2018, the family was able to celebrate a big milestone when Emily started Kindergarten. In September 2019, as Emily was starting First Grade, Ariane posted an update, “And we’re back. She has been rocking a fever since coming home from school on Friday. Currently they think it is a virus, but we are here to be on the safe side.” But two days later, “And then we get a curve ball. Due to the fever, they are going to write it down as ‘suspected cholangitis’ (liver infection). She will need to be on a powerful antibiotic for two weeks. To keep her from being cooped up in the hospital they will place a PICC line and send us home with the meds.”
January 2020 brought a new care plan for Emily. It was now time to have a transplant evaluation done at Children’s Hospital of Pittsburgh, which is typically a three to four-day complete work up that includes preparing the parents to be caregivers. Emily’s transplant evaluation began on February 11, 2020.
In September 2020, Ariane posted, “Emily has started second grade! Her labs are stable. Her doctor has assured us she is safe to go to school and for once, her spleen is actually a protective factor against COVID-19 complications. Pretty ironic. She had a good birthday celebration; it was just sad we couldn’t really include friends this year.”
Emily continued to do well for the rest of 2020 and through 2021. Then on February 25, 2022, “We can’t always have good news when your liver is on a slow decline. Emily has had portal hypertension since she was two years old. As a consequence, blood doesn’t flow normally, especially in the esophagus. To prevent her veins from spontaneously bursting, she is scoped and checked for large veins and then they are banded. Emily had three bands placed today. Her transplant evaluation will now need to be sooner than later.”
On March 14, 2022, Ariane sent a Get Started (COTAGetStarted.org) notification to the Children’s Organ Transplant Association’s headquarters requesting more information. COTA’s Family Outreach Specialist placed a call to Ariane who was able to provide the details of their family’s transplant journey to date. This included the fact that another COTA family who lived near the Hawkins family, and who Ariane had met in an online support group, had become friends. That family suggested Ariane see how the organization might be able to help.
COTA uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with; therefore, COTA’s model shifts the responsibility for fundraising to a team of trained volunteers. COTA is a 501(c)3 charity so all contributions are tax deductible to the fullest extent of the law, and funds are available for a lifetime of transplant-related expenses.
June 1, 2022 – “Transplant Evaluation Day at Children’s Hospital of Pittsburgh was a looong day, but we made it. They will for sure be putting her on the transplant list. But she’s not a good candidate for a living donor at this time. Tomorrow will give us a better idea of her placement on the list. She was a trooper. She gave 28 vials of blood, got COVID shot #3 and socialized with an endless number of adults. We’re exhausted.”
On July 8, 2022, Emily was officially listed at Nationwide Children’s Hospital in Columbus, Ohio, with a low score, which meant it was not an emergency listing for a liver. On July 28th, their signed agreement arrived at COTA’s headquarters … the Hawkins family officially became part of the COTA Family, and Emily became a COTA Kid. Then in early August, Emily was officially listed for a new liver as well.
Ariane explained Emily was a high hemorrhage risk and that is what placed her on the transplant list – severe portal hypertension. She was listed low on the list, however, because her liver (while not actually failing) is at the root of all her issues. Her scenario was uncommon, but luckily there was another option for Emily. Instead of waiting for her condition to worsen or for her to have an emergency event, Ariane and John opted for living donation at Children’s Hospital of Pittsburgh.
On August 15th, Ariane posted, “The summer is wrapping up! Emily is officially listed in both Columbus and Pittsburgh. Our first potential living donor Charmaine Cale, Emily’s Aunt, will be going to Pittsburgh on Wednesday for an evaluation to see if she would be a good match. It’s also Emily’s first day of school. We are going to start fundraising soon with a program called COTA, the Children’s Organ Transplant Association. The funds raised are used specifically for transplant-related expenses. Emily’s GI specialist said that after we find a donor match it will take about a month to schedule the surgery. So, if Charmaine is a match, Emily could potentially be transplanted by this time next month. Send prayers for Charmaine as she travels to Pittsburgh.”
Also in early August, the COTA for Emilys Fight team of volunteers received their specialized training via conference call. The team of friends and family members had been following Emily’s transplant journey for years and were excited to have a tangible way to help alleviate some of the family’s stressors. They immediately got to work planning events to raise funds for transplant-related expenses.
On September 30, 2022, Ariane posted, “We received word Emily’s living donor transplant will be November 11th. I also want to thank everyone who has donated to COTA for Emilys Fight. Thank you … Thank you all so much. We have raised $50,000 in less than a month which is amazing.”
Due to various circumstances, Emily’s liver transplant date was moved up to November 7th. On November 6th, Ariane let the family’s many followers and supporters know they were checked in at the transplant center. She explained Aunt Charmaine’s surgery would be in the morning and Emily’s in the afternoon. On November 7th, Ariane requested, “Send up your prayers; both beautiful ladies are in the hands of others today.” Then a little later in the day, “Emily’s Aunt Charmaine did great, and the liver is in route.” Toward mid-afternoon, “Liver is in, connected and turning pink. Everything’s going well.” At the end of the day, Ariane let everyone know, “One of the surgeons just came to talk to us. He said the liver was the perfect size and she has good flow. They are doing the final connections; Emily should be finished in the next couple of hours.”
The living donor transplant itself went very well and Emily made it through without issues. Aunt Charmaine did great and recovered very quickly. It was Emily, however, who had a very challenging recovery. Ariane said, “She would have one thing after the other go wrong. We spent the next five months of our lives, including all the major holidays, in and out of Pittsburgh with post-surgery complications, viruses and infections. We had to rely on so many people to help. But two important factors kept us going — her liver had good blood flow, and even after multiple tests, her new liver never went into rejection.”
In early April 2023, Ariane let online followers know their hospital visits were becoming a little easier. “Emily started her new medication last night and now they just follow her labs and make sure she doesn’t have a reaction. After rounds this morning, her team told us to feel free to take a day pass (trip). And so, we did!” Two days later, Emily was released with stable labs. Emily told Ariane she was having the best hospital stay ever. She was able to attend a birthday party hospital style and made a new friend. It seemed Emily’s very long transplant journey was entering a new phase – one that would hopefully require less hospital stays and result in the family finding their new normal.
A few weeks later on May 12th, Ariane shared: “This is Emily’s second visit to her class. Her teacher said her classmates asked about her often when she was gone. They had a surprise for her today, a beautiful handmade picture. Each heart was made by a classmate, and they made one for Emily, too. Her class, teachers, parents and support staff have been so wonderful throughout her transplant journey; we definitely feel the love.”
When thinking about their COTA family of supporters, Ariane and John also ‘feel the love.’ “At first, we were hesitant to do any kind of fundraising,” Ariane said. “One concern was the funds would be heavily taxed, and we worried about the hefty fees associated with popular online fundraising options. COTA promised to support us through fundraising for transplant-related expenses. They also award Challenge Grants when certain campaign goals are met. COTA offered the assurance that funds raised would not be taxable, and COTA does not charge a fee for their services. Most important was that fact that COTA will be with Emily for a lifetime of transplant-related expenses.”
Ariane and John were grateful COTA walked their volunteer team through every step of fundraising, provided great ideas for events and supported them with anything they needed as they were planning events and raising awareness about the family’s transplant journey.
While there was hesitancy, at first, to consider fundraising … once Ariane and John started to witness the myriad of transplant-related expenses they were experiencing (and would experience well into the future), becoming part of the COTA Family made complete sense. “Our transplant center is three hours from our home so gas money, lodging, food, etc. are all transplant-related expenses,” Ariane said. “Emily’s medical bills and prescription co-pays have been covered. We have decent insurance, but there have been a few medications it did not cover, so the ability to have COTA help with those was a tremendous relief. The COTA team is very helpful and always responds if we have any issues.”
Another important aspect was the fact that COTA funds can be used for living donors’ expenses, which was very important since Aunt Charmaine was Emily’s donor. “It was such a relief that her travel expenses and household expenses would be covered as well,” Ariane said.
Today, Emily is moving forward but there are still challenging times with her new liver. Ariane shared that Emily’s post-transplant journey has hit some major bumps in the road. As Ariane said, “We have been at this for 10 years and to be honest, her recovery has been pretty hard. Even her transplant team has admitted she’s had a really rough time. One big issue is that we very recently found out she never had Biliary Atresia. Due to the many ongoing complications, her medical team ordered genetic testing.”
Ariane continued, “Emily has an even more rare disease called Neonatal Sclerosing Cholangitis, which was somewhat shocking for us to learn, but important because sometimes patients with this rare diagnosis may also need a kidney transplant at some time in the future. Though this is something we pray never comes to fruition.”
Ariane is very honest about how challenging Emily’s transplant journey has been. She also reiterated how vital it is this family has COTA there for assistance with ongoing and unexpected transplant-related expenses. “The bills just keep rolling in and the trips to Pittsburgh just keep happening,” she said. “We knew the overall costs associated with a life-saving transplant would be challenging, but we did not anticipate the billed amounts we are regularly receiving.”
Ariane endeavors to make Emily’s days at home as normal as possible. She’s an aspiring author and plans to be published someday. Emily loves animals — especially dogs. One future plan still up in the air for this 10-year-old is whether she wants to be a doctor or a chef. Ariane and John are grateful to know COTA will be there for Emily well into the future. This July, the Hawkins family will be enjoying summer fun and likely celebrating Aunt Charmaine’s selfless gift on the 26th. On July 4th, the COTA Family will be celebrating Mom Ariane’s selfless service to our country. COTA is celebrating with you, Hawkins family.
