On March 15th, 2019, Joshua Buchheit turned 2 years old. We know, it doesn’t seem like too much of a big deal: A lot of little boys and girls will reach this achievement throughout the year. But for Joshua, the odds of even reaching this milestone were extremely slim, let alone passing it as the smiling boy you see in the pictures below.
Joshua was the recipient of a life-saving kidney transplant at Boston Children’s Hospital in November of 2018, after suffering an illness that began before he was born.
There are currently hundreds of thousands of people currently awaiting life-saving organ transplants in the USA. Here’s Joshua’s story.
At Joshua’s 20-week growth scan in utero, the doctors pointed out something worrying in the sonogram.
“There was a little bit of fluid in his kidneys,” Joshua’s mom, Jen Buchheit said. This is known as hydronephrosis, in Joshua’s case, caused by a blockage of his post-urethral valve.
A subsequent 24-week high-risk ultrasound revealed the amount of amniotic fluid—fluid that surrounds the baby in the womb and is especially vital to lung development—was virtually non-existent. The fluid is largely composed of urine produced by the baby’s kidneys and contributes necessary pressure and support for the baby’s developing bones, muscles, and digestive system.
At 27 weeks, “his bladder was very distended. His kidneys, his ureters all had fluid.”
On January 9th, 2017, Jen visited Boston Children’s Hospital for further analysis and consultation. The staff explained the severity of the situation, and she decided to relocate from Virginia to Massachusetts to ensure he’d get the best possible care. It’s a decision she’s glad she made.
“Boston Children’s Hospital is an amazing place. He would not be alive if we did not choose to go there,” she said.
Despite the excellent care they would receive, the move meant Jen would be separated from her three boys and husband.
“It was difficult, but it was manageable because we had a ton of help.”
Joshua’s lungs were dangerously underdeveloped and was in end-stage renal failure even before birth. The situation seemed dire as Jen and the hospital staff prepared to deliver the baby. Joshua only had a 50% chance of survival in his first year of life.
Miraculously, Joshua was born after 37 weeks in utero, and even cried and urinated despite weak lungs and a blocked post-urethral valve. Unfortunately, the urine was not what is commonly referred to as “smart pee,” meaning the toxins that are supposed to be expelled remained in his body.
In short—Joshua’s kidneys weren’t doing their job. On top of this, shortly after birth, he blew a hole in each lung. Once they were able to get his respiratory system working properly, they could begin treating the root of his problems—clearing the blockage and getting his kidneys working.
He began dialysis at a month old.
As anyone who has been on, or accompanied someone on, dialysis knows, the process is grueling. Joshua spent 13 hours a day on peritoneal dialysis connected to a machine built for an adult, performing as a substitute for functioning kidneys.
“The endgame was a kidney transplant. You can’t live on dialysis forever,” Jen said. In addition to failing kidneys and other complications due to his blocked post-urethral valve, Joshua had pulmonary hypertension (high blood pressure in the arteries of the lungs), and pulmonary hypoplasia (incomplete development of the lungs).
Joshua’s family and the doctors wanted to get him a kidney transplant as soon as possible, but they would have to wait for him to mature and grow stronger before the operation could be successful. In the meantime, they began the process of donor matching.
Donor Matching & Kidney Transplant
Kidney transplants do not require a living donor, although doctors prefer it. Fortunately, Joshua had many willing participants, including members of his family, their friends, and their in-home nurse. But for a transplant to be approved, it must be sanctioned by virtually all medical disciplines, from nephrology (the medical discipline related to the kidneys) to ophthalmology (the discipline concerned with eyes and vision) and everything in between.
Add to this the difficulties of operating on a toddler, and the process becomes exponentially more complicated. After deliberation and many tests, Joshua’s father Ryan was selected to be the donor. At about 20 months old, the doctors determined Joshua had finally grown and developed enough for surgery and signed off.
While the recovery process after the surgery hasn’t been without its own obstacles, including a collapsed ureter after a stint was removed, the positive change was near immediate.
“It’s been a miracle. The change in him has been incredible to witness. We literally saw him change before our eyes. Things he wasn’t doing before, he’s doing. Things that were hard for him aren’t hard anymore. His color changed, his skin texture changed […] He’s not throwing up anymore.
“It’s been a miracle. The change in him has been incredible to witness. We literally saw him change before our eyes."
- Jen Buchheit
“He had a dimple that for 20 months I never knew he had because he had extra fluid on him…He started standing. He started trying to walk, trying to talk. Now he’s like a maniac,” Jen said.
Jen shares Joshua’s story and her musings about the joys and challenges of raising four young boys—one of which requires constant medical attention—on her blog and Instagram, aptly titled “jenis1tiredmom.” Jen’s sister created the hashtag #TeamPee, a humorous rallying sentiment with a serious basis; for patients suffering from renal failure, pee is cause for celebration.
Jen says the support for her family and son has been overwhelming, enough to restore her faith in humanity.
“The people that have stepped up and helped and come to our aid and followed Joshua’s story—I am genuinely shocked…Joshua got about a hundred pieces of fan mail from random people just saying they were praying for him and they were thinking about him, and people wrote him checks…There are good people out there.”
While Joshua’s now doing much better, the journey has been a battle for all those involved. Joshua’s older brothers, Joseph, Ethan, and Evan, have grown accustomed to the struggles of tending to a sick baby brother.
“They’re used to wearing medical masks, they’re used to reconnecting Joshua’s vent if it comes undone, and shouting that he needs suction, and hospitals and tubes…all the things that 6- and 4-year-olds should not have to deal with,” Jen said.Now that they can rest a bit easier, Jen and Ryan have begun thinking of ways to help other families in similar circumstances.
Changes Need to be Made
In addition to being inspired by the generosity of her family, friends, and the staff at Boston Children’s Hospital, Jen has had her eyes opened to the struggles that transplant recipients, donors, and families go through.
“We didn’t know this world existed, and it’s a whole other world […] You’re literally in a battle. You’re in the trenches just trying to keep your kid alive. Once you get over that mountain, through and out of that kind of environment, and you have a chance to sit back and say ‘Oh my gosh, this is really important,’ and you don’t want other people to have to fight this hard to get an organ, to struggle as much.
“We’ve had so much help, and I can’t imagine not having that help. We also had all of the other good things—faith, hope, love, good family, good friends—but we had support with our community here in Massachusetts and there in Virginia. The fact that somebody wouldn’t have that community is really sad and scary to us.”
There’s good reason for her concern—wait lists for transplants are tragically long, with approximately 113,000 people on the waiting list as of January. Additionally, even when organs from deceased donors are matched with a suitable recipient, there’s no guarantee the organ will get used.
"We had support with our community here in Massachusetts and there in Virginia. The fact that somebody wouldn’t have that community is really sad and scary to us.”
- Jen Buchheit
According to data collected by University of Pennsylvania School of Medicine in 2016, the percentage of accepted organs varies significantly depending on the receiving transplant center. Some centers accepted about 58% of offered livers, while others accepted only 16%. The rejected livers are then offered to the next patient on the list. In some cases, this can lead to usable organs going to waste, despite an organ shortage.
There’s plenty of theories behind the discrepancy. For one, transplant centers are judged using 1-year post-surgery survival rates as the primary metric for success. A poor survival rate can result in many consequences—audits, Medicare and Medicaid refusing to pay for treatments at their center, even shutdown of the facility all together. While 1-year post-surgery survival rate is certainly a vital measurement for identifying underperforming transplant centers, using it as the only way to measure success is problematic.
To preserve encouraging statistics, centers may be inclined to refuse organs that are less than ideal, or even refuse to operate on an elderly or sickly patient. The United Network for Organ Sharing (UNOS) is working on adding additional statistics to assess a transplant center’s effectiveness.
Much of the problem, Jen said, comes from a lack of transparency and oversight around the donor-matching process—a view that is echoed by concerned medical professionals.
“Patients, providers, and insurers really don’t know anything about this stuff. This is an area that needs to have some more transparency,” David Goldberg, Assistant Professor of Medicine at the University of Pennsylvania told the Atlantic.
It’s an issue of grave importance without a simple solution. Fortunately, there are people willing to face the problems head on. Motivated by her family’s experience and a desire to help patients and their loved ones going through similar struggles, Jen’s created a Change.org petition, and her and her husband have begun the process of founding a non-profit organization—the Strong and Courageous Foundation—to advocate improvement of the organ donation system.
“If we can do better, there’s no reason not to,” Jen said.
There is also encouraging news—laws and programs have led to a steady incline of organ donor registration and transplants. 2017 broke the record for organ donations in the U.S., due in part to the loosening of federal regulations that had barred donations from donors that died due to drug overdose and circulatory failure.
Campaigns encouraging donor registration and educating the public seem to have had a positive impact in the recent years. Based on figures drawn from 2018, over half of U.S. adults are registered donors.
Positive change is coming at the state level too. Lauren’s Law, which lowered the age limit of eligible donors to 16 years old led to a record-breaking year for donor registration in New York. The state saw 604,163 new participants sign up—with over 55,000 coming from the newly-created donor pool. Montana, Alaska, and Washington lead the charge, where 93%, 92%, and 89% of the state’s populations are registered donors, respectively.
You can follow Joshua’s story on Jen’s blog “1 tired mom, and her Instagram page. For more information on organ donation, or for instructions on how to register in your state, please visit our page on organ donation.