New Jersey Dad Donates Kidney – and Plans
to Donate Part of His Liver – to Ailing 2-Year-Old Daughter: 'I Would
Give Her All My Organs If It Helped'
Paul and Madeline Rybkin
Paul Rybkin and Karen Rodas knew the
challenges ahead of them when they discovered their baby had a rare
genetic disorder – but they were ready to face them.
The Saddlebrook, New Jersey, couple's 2-year-old daughter Madeline has
autosomal recessive polycystic kidney disease (ARPKD). The disorder, which results in the deterioration of kidney and liver function, can be fatal.
The couple's first child, Nathaniel, died from the same
condition just 36 hours after his birth in 2012 – but it's not a "death
sentence," Karen says.
"The kidneys form large, water-filled cysts, and these cysts
start to prevent the kidney from working normally," Karen tells PEOPLE.
"They become really enlarged and the function decreases because of these
cysts. The kidneys control a whole slew of things, so these cysts start
to interfere with that."
Both Karen and Paul, who have been together for five years,
carry the recessive gene that causes ARPKD, which ultimately occurs in 1
in 20,000 individuals, according to the
PKD foundation.
Despite knowing that they had a 1 in 4 chance of passing it on to their
children, they still opted against doctors' suggestions to terminate
their pregnancy at 20 weeks.
"We thought our chances were good that our next baby would be healthy," says Karen, who owns a deli with Paul.
Paul and Madeline Rybkin
YouCaring
A Devastating Diagnosis
Madeline
was born prematurely at the Children's Hospital of Philadelphia on
November 7, 2013, and was immediately hooked to a ventilator to help her
lung tissue development. Karen says that she and Paul, both 38, knew
early on that their daughter would eventually need a transplant.
"It was not a matter of if, it was a matter of when," she says.
Both parents were immediately tested and Paul ended up being a perfect match for Madeline.
"I decided if I was a match, in a heartbeat I would donate with
no questions asked," Paul tells PEOPLE. "It was one of the happiest
moments of my life – there are so many people out there that suffer and
wait for a transplant, and they suffer the entire time they are
waiting."
As the concerned parents watched their daughter get sicker, they
were devastated when doctors told them they had to wait for the
transplant procedure.
"We had to watch her get worse before we could watch her get
better," Karen says, noting that because Madeline's kidneys still
functioned, and she was just a baby, an invasive surgery would be
dangerous.
Madeline continued to grow – as did her kidneys. And at 6
pounds, 3 ounces each, they ballooned to nearly triple the size of a
normal adult's kidneys.
Madeline before (left) and after (right) her transplant
YouCaring
"She
had trouble breathing, she had trouble eating, she was just very tired
all the time – she struggled doing basic things like sitting up," Karen
remembers. "We had to watch her not do well, and not be a normal baby."
Adds Paul, "Madeline has been through a lot and she's been
through more than any individual should have to go through – let alone
somebody under the age of 2."
Preparing for the Transplant
Madeline could barely
eat, and she threw up almost every night. It was then that Karen and
Paul decided to get a second opinion. The couple met with Ron Shapiro,
surgical director of the Kidney and Pancreas Transplant Program at Mount
Sinai's Recanati/Miller Transplantation Institute in the summer of
2015, and after a few months of testing, Madeline's transplant was
scheduled for January 19.
By the time the surgery rolled around, however, Madeline had grown so sick that she had to be on emergency dialysis.
"It was terrible, I hated it. Thinking about it now – she wasn't
really living her life, she was just kind of existing," Karen says
through tears. "Madeline was always happy, as sick as she felt through
everything, she always smiled."
The surgery – performed by Dr. Shapiro and Dr. Scott Ames – was a
success, and while Paul had a painful recovery, Madeline did
beautifully.
"She is a completely different child. It's like a light went
on," Karen says. "She wants to move, and she's got energy, and now she
fights it when you put her down for a nap. She laughs, and laughs and
laughs," she adds.
Paul says Madeline is "obsessed" with the Cookie Monster and loves going to the park just to sniff the flowers with her "daddy."
"Flowers are her favorite things, I bring her some after I come
home from work every day," says Paul through tears. "We don't allow much
time to pass without spending time together."
Madeline, post-op
Karla Rodas Photography
The Long Road to Recovery
Madeline
isn't completely out of the woods, however. While the toddler hasn't
had any issues with her new kidney, she's had a few unrelated infections
that are more dangerous due to her suppressed immune system. She'll
take immunosuppressants for the rest of her life, and will always face
the chance of rejection. Dr. Shapiro also says that it's hard to
pinpoint an exact expiration date for Madeline's kidney, but noted that
it could last between 10 and 20 years. "Oddly enough, if you look at
small kids getting kidneys from parents, they tend to do exceptionally
well, so this kidney may last longer," he explains.
In addition, Madeline's liver has some thickening, a sign of cirrhosis. She will eventually need a transplant.
"We found out that I can donate part of mine to her when that
time comes," Paul says. "I would do that without blinking. We went
through the compatibility test and are all set. I'm expecting to and I
would give her all my organs if it helped."
While Paul manages the family's deli, Karen devotes all of her
time to care for Madeline, something Dr. Shapiro applauds. "It's of
enormous importance having a parent who is so skilled at taking care of
their child," he says. "Taking your medications perfectly all the time,
forever, is the whole show. Karen is really with the program, and it
makes a huge difference."
The couple hopes to offset some of their steep medical costs through a
YouCaring crowdfunding campaign.
Paul and Karen are also balancing being parents to two children
under three. Karen and Paul welcomed a second daughter, Penelope, in
January 2015. Karen says that when she unexpectedly got pregnant, she
and Paul were concerned about the baby being born with ARPKD.
Karen's pregnancy was closely monitored, and at around 20 weeks,
Penelope was deemed ARPKD-free. Karen says her doctors were cautiously
optimistic, and after the baby's birth, an ultrasound showed she was
perfectly healthy. Karen's older son Jackson, 9, (from a previous
marriage) was also born without ARPKD.
Paul and Karen are now settling into life as a family of five – and they're grateful for Madeline's improved health.
"I
don't think I did anything any other parent wouldn't do given the
opportunity," Paul says. "Knowing it was successful was the best feeling
I've ever had. I saved her life – that's the bottom line. It's a
feeling that's difficult to describe – knowing that I was able to give
her a second chance at life."
And at just 2 years old, Madeline knows about her dad's
sacrifice. "She loves her daddy, they have a special bond," Karen says.
"If we say the word 'Dada,' she pats her belly… she understands more
than we give her credit for."
"I can't put into words how much I feel for her," Paul says. "She's daddy's little girl. We're best buddies."
The
immediate past president of the Senate, Senator David Mark has debunked
reports in the media linking him to Panama papers which alleged that he
operated offshore companies, insisting that he has no connection,
whatsoever, to any of the companies registered, operated or managed by
the Mossack Fonseca Law Firm. In a statement seen by THE SUMMONS MAGAZINE on Thursday that was signed by Paul Mumeh, the
lawmaker representing Benue South maintained that his name is not listed
anywhere in the database of Mossack Fonseca Law Firm in the released
materials of the Panama Leaks.
