Fundraiser helps couple with pregnancy
A young Wisconsin couple, Alex Mahner and Derick Rausch, are currently fighting against the odds to ensure their developing baby boy can be brought to term and survive long enough to get the life-saving care he requires.
The couple found out Mahner was pregnant with their first child in February, and were absolutely ecstatic to receive the news. Mahner had experienced medical issues in the past leading to difficulties in getting pregnant, so the pregnancy was cause for celebration towards the blossoming of their family.
However, in early June, the couple received horrible news. While at the hospital for a routine ultrasound intended to reveal the baby’s gender, they ended up getting much more than they bargained for: their baby was not developing organs correctly, and they needed to see a specialist doctor to see if their was a solution.
“It was mostly just confusion at first, because you don’t hear about something like this out of the blue,” Mahner explained. “The very next day we saw a fetal development specialist, and he got a more in-depth vision of what the organs looked like.”
After further examination, the doctor informed them their unborn child was afflicted with bilateral renal agenesis (BRA), a condition occurring in children in which they don’t undergo the necessary development to grow kidneys while in utero. The condition is brought on by genetics, with Mahner saying there was less than a 3% chance of the affliction being carried down; about 1 in 4,000 births are affected. According to the Minnesota Department of Health, 40% of babies with BRA are stillborn, and many who make it to term will only survive for a short while.
In Mahner and Rausch’s case there is no kidney development in the fetus whatsoever; the lungs and bladder are affected as well. Without any sort of intervention, the specialist told them their baby would likely be pre-term and die.
“It was a very, very hard time,” said Mahner. “We were pretty much devastated...”
Providing a sliver of hope, their doctor informed the couple of an ongoing clinical trial study centered around baby organ development, aimed at preventing and remedying development failure. The study is being held at the Mayo Clinic in Rochester, Minn., and mainly focuses on lungs, although kidney growth is looked at as well.
So, Mahner and Rausch took up the opportunity, which involves Mahner receiving multiple injections over the course of her pregnancy.
Mahner has to be awake for the process, so she only gets local anesthesia to numb the area. Then, using a large needle, doctors inject a substitute amniotic fluid into the uterus over the course of an hour, providing the fetus with vital protection and a nutrient gateway that isn’t being naturally produced. She is scheduled for one infusion every Thursday.
If the lungs develop properly and are able to adequately provide oxygen after the baby is born, the next step is to perform dialysis on the baby in place of kidneys until a donor can be found and transplanted.
“If the baby isn’t large enough, dialysis won’t even work,” said Mahner, further explaining the difficulties of the process. “Then we just have as much time as we’ll have with him after birth.”
If the baby is of suitable size, doctors will place him in an incubator and get him on a dialysis regiment, keeping him in the hospital for many months until Mahner and Rausch are allowed to take him home. Once he weighs 22 pounds he will be viable for a kidney transplant, a process that can take a year to complete. There’s been a few success stories across the country, but since the study is so new there haven’t been a whole lot. Yet, it does provides hope for the aspiring young family.
With the torrent of bad luck and stress, Mahner and Rausch are doing all they can to stay above water. The couple are temporarily moving to Rochester to be closer to the hospital, but they don’t want their lives to be uprooted from their beloved Wisconsin community.
Mahner owns a home in Chelsea which she is renting out to help cover bills, and Rausch has a job. Still, they are concerned with what could happen, particularly in regards to being forced to sell the house. As such, a fundraiser was set up to help alleviate the mounting costs.
“With the restrictions from my infusions it is extremely unlikely that I’ll be able to hold a job while I’m gone,” Mahner said. “Any money is to keep my bills on track so I can keep my home, and still do these treatments... But at the end of the day, we want to do whatever is necessary for the baby.”
The fundraiser is on the “gofundme” website and can be found by searching “Helping save baby Blue” in the search bar.