Deciding to Treat Fetal Renal Failure: Information & Support for Families

Treating fetal renal failure is a lifelong commitment: After delicate procedures during pregnancy and at birth, the child will need daily dialysis through their first years of life. Eventually, they’ll need one or more kidney transplants, including daily immunosuppressant medications to keep them from rejecting their new kidney.

Before starting on this path, families need to be fully informed about:
•    Health risks and quality of life for their child at each stage of treatment
•    Emotional, logistical and financial demands for their family
•    Additional stressors based on their family’s unique situation

At Connecticut Children’s Fetal Care Center, we make sure that families don’t just get general information about all this. We’ve created an in-depth counseling process so they understand exactly what it means to them.
 

Treating fetal renal failure relies on many different types of medical experts throughout a child’s lifetime. We introduce families to all of them.

Connecticut Children’s experts work one-on-one with families, then altogether as a team, to discuss whether they may be a candidate for fetal renal failure treatment.

Specialists in Maternal Fetal Medicine, Fetal and Pediatric Surgery, Neonatology and Pediatric Nephrology all meet with families considering treatment for fetal renal failure. Together, we prepare them with all the facts and medical opinions they need to make their decision.

This whole-team approach is unique among fetal care centers in the nation.
 

Here are a few examples of the Fetal Care Center experts who meet with families, and the types of questions they address.

Fetal surgeon Timothy Crombleholme, MD, FACS, FAAP

For questions like:

• What happens during the fetal surgery to place the amnioport device?
• What happens during mom’s subsequent amnioinfusion procedures?
• Will mom need to relocate during the pregnancy to be close to Connecticut Children’s?

Additional fetal care experts, like fetal cardiologists

• What other monitoring, imaging and procedures will mom and baby need during pregnancy?
  • Related: 5 Reasons You Might Need to See a Fetal Cardiologist 

Maternal-fetal medicine (MFM) specialists 

• Will this treatment affect mom’s ability to become pregnant again?
• What is the plan for a safe labor and delivery?

Neonatologists 

• How long will the baby need to be in the hospital after birth? 
• What does caring for a newborn on dialysis involve?

Pediatric Nephrologists

• What kind of specialty care will this child need as they grow?
• Will the family need to relocate to be close to this specialty care?

Pediatric Surgeons

• What happens during the newborn surgery to place the peritoneal dialysis device?

Transplant Surgeons

• What new health challenges does a child face after a kidney transplant?
• When would this child likely need another transplant? 

Psychologists

• How could pursuing this treatment impact the family's overall well-being?
• Do they have access to the social, emotional, financial and logistical support they'll need?

Receiving a diagnosis of fetal renal failure can be overwhelming and emotional. But in many cases, families have a treatment option.

We’ve built our fetal renal failure program as a resource for these families, and their providers like MFMs and OB/GYNs.

We’re here to help you understand all the treatment options — and make sure you get all the support you need.