By Chris Lewis | Jan. 14, 2021
A Harbour Grace family is bound for the United States with high hopes and anxious hearts.
Paul and Kristen Fitzgerald are preparing for child number two, having got the happy news that Kristen is pregnant late in 2020. Now, at 23-weeks along, the couple find themselves preparing for a trip south of the border for treatments that will hopefully save their unborn baby’s life.
Just before Christmas, the Fitzgeralds learned their baby has the genetic disorder bilateral renal agenesis, more commonly known as Potter’s Sequence.
What that means for baby Fitzgerald is that the pregnancy has been going fairly normally, aside from the fact that there are no kidneys being developed. The absence of kidneys results in a deficiency of amniotic fluid in pregnant women.
The Fitzgeralds got a scan done earlier this month, and were told their baby had a strong, healthy heartbeat and brain activity and blood flow were all up to par. The only issue is the lack of kidneys.
A complicating factor, however, is that treatment for this condition, called an amnioinfusion, while it can technically be done here in Canada, is not a recognized treatment for this particular condition.
“When we first got this news, we were told it was a fatal diagnosis and there was nothing that could be done,” Kristen said. “The only options we were given was to terminate the pregnancy immediately, or to deliver to term knowing the baby would die only minutes after birth.”
To Kristen and Paul, neither of those options were acceptable.
So, they began doing some research. They discovered there is a medical trial taking place in the United States for babies being born with Potter’s Sequence. The babies are put on dialysis after being born, and later undergo a kidney transplant.
The oldest survivor of this treatment right now is seven-years-old, and Kristen said she seems to be doing just fine since the kidney transplant.
Still, there are more issues facing the Fitzgeralds when it comes to this procedure: they are not allowed to pay out of pocket for the trial, so they must get backing from either the provincial or federal government in order to be accepted.
Kristen and Paul have gone to the province seeking support, but have not yet received a decision as of Monday, January 11. They are both lobbying Health Canada to change its position on the procedure.
Meanwhile, there are doctors in the U.S. who are using the infusion as a treatment for the condition outside of the trial, some of whom have been doing so for a number of years. Kristen said she and Paul managed to find a doctor in Omaha, Nebraska who has had a lot of success with the treatment, and has agreed to take them on as patients.
“We’re hoping that, by the end of this week, we’ll be in Nebraska for this treatment,” Kristen said.
This, she said, is only possible because of the support they’ve received from their community.
Upon hearing about their predicament, Paul’s sister Vicki Harris set up a fundraiser to help the family reach the United States, and hopefully cover some of the associated costs. Kristen said the estimated cost of the medical treatment up until being placed into the Newborn Intensive Care Unit (NICU) is upwards of $55,000 US – just under $70,000 CAD.
“We’ve had people cover airfare, we’ve had people donate hotel rooms for a week or two at a time, and plenty of cash donations,” Kristen said.
While there is a Gofundme page active, she said many people have been sending money through email transfers.
They have set up a bank account for baby Fitzgerald, and any money raised goes straight into it, she said.
There is some good news among all the chaos, though. Kristen said the doctor performing the treatment has agreed to work in conjunction with the IWK Health Centre in Halifax. That is the hospital of choice, since the Janeway Children’s Hospital is unable to properly care for the baby once it is born.
“They’re willing to work with the hospital in Halifax so that we can come back to Canada to deliver the baby,” Kristen said. “From the conversations we’ve had with the hospital, we should only be in Halifax for maybe three months. Then, we’ll be home again, where they’ll teach us how to do an at-home dialysis until the baby is the proper age to get a kidney transplant.”
Kristen said the baby needs to be at least one-year-old before being added to the list.
The community support is heartwarming Kristen said, and has played a massive role in their journey thus far. She described it as the community “supporting this baby’s chance for life.”
Although it has been difficult trying to get their family down to the United States during the pandemic, Kristen, Paul and four-year-old Lee are hoping to be in the air this week.
“We’re hoping to be out of here by Friday,” Kristen said. “When it comes to these infusions, time really is of the essence. The longer it takes for us to get them, the lower the chances are for the outcome. So, we need to get there as soon as possible.”
Anyone wanting to contribute to the Fitzgeralds and their baby’s journey can do so by finding their Gofundme page: Saving Baby Fitz, or by emailing them at firstname.lastname@example.org. Anyone sending a money transfer via email should make the password “baby” or “baby fitz” for simplicity’s sake, Kristen said.