Yeah, having a baby is such an exciting time, but it can also be a very stressful one as there are all kinds of things that can go wrong. It’s only natural that new moms and dads tend to worry about every possibility and worst-case scenario, hoping with all their might that their child will be born happy and healthy. But some couples like Karen Rodis and Paul Ribkin experience firsthand what can happen when things go wrong? Karen and Paul were initially thrilled to say Hello to their baby boy, Nathaniel, but had to say goodbye to him.
Just 36 hours later
Nathaniel was born with a rare, life-threatening condition known as polycystic kidney disease.
The main symptom of this disease is the development of cysts inside the kidneys, and it often leads to kidney failure, which can be fatal. In Nathaniel’s case, it was too much to bear for a newborn baby. The couple had the courage to try for another baby and welcomed their daughter, Maddie, into the world in 2013. Sadly, little Maddie was born with the exact same disease. A toddler who looked eight months pregnant because of rare disease has been saved thanks to her dad, who donated his kidney.
Maddie Rabkin, now two, was born with a condition called polycystic and kidney disease, which meant cysts grew on her kidneys, causing her stomach to look enlarged. Polycystic Kidney Disease PKD is an inherited disorder in which clusters of cysts develop primarily within your kidneys, causing your kidneys to enlarge and lose function over time, cysts are noncancerous, round sacs containing fluid. These cysts vary in size and can grow very large. Having many cysts or large cysts can damage your kidneys. Polycystic and kidney disease can also cause cysts to develop in your liver and elsewhere in your body.
The disease can cause serious complications
Including high blood pressure and kidney failure. Pkd varies greatly in its severity, and some complications are preventable. Lifestyle changes and treatments might help reduce damage to your kidneys from complications. Then her condition started to get even worse. She was sleeping for up to 18 hours each day, having no energy at all and vomiting all the time.
Her parents were living in a constant state of stress made much worse when doctors gave Karen and Paul the news. They were so scared to hear their daughter was going to die without a kidney transplant. Although Maddie’s condition was managed early on when she reached 18 months, her parents, Paul Ribkin, and Karen wrote us were told she urgently needed a kidney transplant. Luckily, her dad was identified as a donor, and following a life-saving operation in January 2016, she’s recovered well. Any father would have done what I did donating my kidney to Maddie, Rabkin said.
It’s part of being a parent now
We’re high and can watch Maddie grow up as a happy and healthy little girl. Maddie’s parents from New Jersey in the US are both carriers of the recessive gene for PKD, a genetic condition that leads to the deterioration of kidney and liver function. The couple found out they carried the recessive gene when Rodis, who is also mum to Jackson, aged nine from a previous relationship and one-year-old Penelope with Rabkin, fell pregnant with their first child together. Nathaniel Rogers carried Nathaniel until full term, but he died after just 36 hours.
During my pregnancy with Nathaniel
We discovered we both carried the recessive gene PKD, meaning the chances of any of our babies surviving if they were born with it was very low, Rhoda said. He didn’t stand a chance. Just 36 hours after his first cry brought him to life on August 4, 2012, he was gone. Medics warned the couple. If they tried for another baby, he or she would have a 25% chance of carrying the condition, too.
But Rodis and Ripkin didn’t want to let go of their dream of having a big family. When I fell pregnant again, we were both over the moon, Rhodes explained. Then at our 20-week scan, doctors found Maddie’s kidneys were enlarged, a sure sign of PKD, just like Nathaniel, my heart sank. I was determined we didn’t lose our baby to the deadly disease again. The family found a doctor in Philadelphia who knew how to look after babies with PKD.
In November 2013
They traveled to the Children’s Hospital of Philadelphia for what should have been a routine scan. At 33 weeks, however, Rotis had to be induced to bring on labor early to save Maddie as she’d become entangled in her umbilical cord. After 12 hours, Maddie arrived. Her stomach was bloated, which doctors said was a symptom of her condition. Maddie was kept in hospital for seven weeks, and on Christmas Eve, her parents surprised their family by bringing her home for the next year and a half.
Maddie was a happy little girl who, despite still needing tubes and oxygen at home and regular hospital visits, was doing well, but then her kidneys started to fail and a transplant was urgently needed. After Rabkin was identified as a match. The operations took place on 19 January 2016, with Paula and Maddie, two of my most precious souls going under the knife. My nerves were a wreck, Rhoda said. I kept thinking, what if something happens to them both?
How will I cope?
Thankfully, both operations were a success, and after a few weeks of rest, Rhodes said, Maddie seemed like a completely different child, Rhotic continued. Daddy’s kidney has saved our little girl. She has boundless energy. Her massive tummy now looks a little bit rounded, but she’s happy and healthy.
Two-year-old. She’ll need another transplant in 25 years, but that feels like a lifetime away. Mary was born with little hope and a condition that threatened her life. But the wonders of modern medicine and the boundless love of her father helped to save her. This wonderful, inspiring story shows us how precious and fragile life can be.
It’s vital to make the most of every second we have and treasure all of our nearest and dearest each day, Karen added, Daddy’s kidney has saved our little girl. Now she has boundless energy. Her massive tummy now looks just a little bit rounded, and she’s a happy and healthy two-year-old. She laughs so much. Big Belly laughs.
And she feels good, which was something she wasn’t used to. She’ll need another transplant in 25 years. But that feels like a lifetime away, Paul said. We’ve been on a roller coaster, but any father would have done what I did. Donating my kidney to Maddie.
It’s part of being a parent. Now we’re on a high and can watch Maddie grow up as a happy and healthy little girl.