3 Things to Know About Treating Fetal Renal Failure

It’s actually a series of many treatments, organized into stages of a child’s life.

• During pregnancy: Mom comes to the Fetal Care Center several times a week to have her amniotic fluid levels checked. If the fluid is low, an infusion of saline is given around the fetus.
• At birth: The baby needs immediate surgery to place a device for peritoneal dialysis, which does the work of their kidneys.
• For their first years of life, the child must have daily, at-home dialysis treatments. This continues until they’re big enough for a kidney transplant.
• Usually around age 3, the child may be a candidate for a kidney transplant. After a successful transplant, they can come off dialysis, but will need to take daily immunosuppressant medication to keep them from rejecting their new kidney.
• As a transplant survivor: The child will navigate a new set of health challenges, such as the effects of daily immunosuppression medication. Later in life, they will likely require another kidney transplant.
• Throughout life: The child needs ongoing medical care from specialists like nephrologists.
   

For parents, siblings and other loved ones, each of the above steps can be stressful in its own way. Every new medical procedure may bring new household fears, financial pressures and care routines.

In particular, caring for a child with renal failure places unique demands on a parent’s time and energy. From daily dialysis to simply driving to and from medical appointments, the responsibilities can become overwhelming, especially if there are other children in the household.

For help:

• Families must often lean on extended family and friends. That includes practical support, like help with childcare and transportation, as well as emotional.
• At Connecticut Children’s, families may also connect to the Sunflower Kids Team. This team offers kids and families an extra layer of medical, emotional and other support for living with serious illness.
   

This is true at all stages of fetal renal failure treatment.

During pregnancy: 

• Leading up to the birth, both mom and baby need ongoing, in-person care from a qualified fetal care center. Because there are only a handful of centers in the U.S. that offer treatment for fetal renal failure, families often need to travel for this care, temporarily moving close to a fetal care team.
• For many families, Connecticut Children’s Fetal Care Center is the best choice. We’re among just a few centers that offer the amnioport approach for complicated pregnancies — and the only one led by Dr. Crombleholme, the fetal surgeon who developed it.

At birth:

• It’s usually best for the baby to be delivered and receive neonatal care in the same place as their fetal care team. For some babies, this means an extended NICU stay — which can also mean an extended relocation for families.
• Once again, for many families, Connecticut Children’s is the best choice. Dr. Crombleholme is one of the only pediatric surgeons in the nation who can place the crucial device for peritoneal dialysis in newborns as tiny as 1,500 grams. Most other centers require a higher birth weight.

Throughout childhood:

• Kids living with renal failure need close, convenient access to pediatric nephrologists and other specialists. Families who live within driving distance of a pediatric health system like Connecticut Children’s are all set. But families who live in other parts of the country may need to relocate to get the care their child needs.

If you’re deciding what to do about a diagnosis of fetal renal failure, Connecticut Children’s Fetal Care Center is here to help. We offer in-depth counseling from a range of specialists, designed to help you truly understand this diagnosis and treatment — and what it all means for your family.