Seventeen weeks pregnant with her fourth child, Katie Hauge and her husband Curtis, both of Havre, Mont., decided to have an elective gender ultrasound to find out the sex of their baby.

Yet instead of getting happy news, the ultrasound technician urged Hauge, then 28, to go to the emergency room immediately.

“He showed me that the baby had a bunch of fluid in places in her body where she shouldn’t,” she recalled.

Once at the hospital, doctors did another ultrasound which confirmed that the baby had fluid and swelling throughout her body. Yet they didn’t give Hauge a diagnosis and instead told her that the baby had less than one percent chance of living. “She’s just going to die, there’s nothing we can do about it,” the nurse explained.

When Hauge got home, she sat down with the report, started to do her own research and discovered that it was likely that her baby had hydrops fetalis, a serious condition that causes fluid to buildup in several organs of the body.

“Everything I was reading said the sooner that you get in for treatment, the higher the chance for survival,” she said.

After calling several perinatologists who refused to see her without a formal diagnosis, she finally found one who took her in immediately.

More ultrasounds, an amniocentesis and several tests determined that her baby indeed had hydrops fetalis and heart failure. They believed the cause was parvovirus B19, or fifth disease, a common infection in children.

“If a mom gets an infection, it can also cause the fetus to develop anemia where it can basically shut down the fetus’ ability to make red blood cells,” said Dr. Kevin Gomez, a maternal fetal medicine specialist at the Center for Perinatal Medicine at Northside Hospital in Atlanta, Ga.

Her doctor explained that the infection would eventually go away, and the hope was that the baby would make her own blood cells and recover.

More on this...

Hauge was monitored several times a week, and although the baby initially seemed to improve within just a few days her condition worsened. Hauge was referred to a specialist who is an expert in intrauterine fetal blood transfusion, an ultrasound-guided procedure that delivers life-saving red blood cells to the fetus either through the umbilical cord or through the baby’s abdomen.

“When we saw him, he said my baby probably had less than 48 hours left to live unless we did the blood transfusion,” she said.

There was also a 50-50 chance the baby would die during the procedure and Hauge was told that if anything went wrong, they would deliver the baby but they wouldn’t try to save her.

“She’s too sick, she’s too early, there’s no chance that she could make it,” her doctor said.  

Intrauterine fetal blood transfusions are rare, but save pregnancies
The most common reason intrauterine fetal blood transfusions are done is for RH incompatibility, which happens when the mother’s blood is RH negative and the baby is RH positive.

The mother makes antibodies which attack the fetal blood cells and cause anemia. The anemia can become so severe that the baby develops hydrops fetalis and heart failure.

“If left untreated in that situation, the fetus can die,” Gomez said.

Intrauterine fetal blood transfusions allow the baby to receive blood cells from a donor to treat the anemia and prevent him from making his own.

“When we sample the baby, we get to the point where the baby has no more fetal blood cells during the pregnancy,” Gomez said.

Since most pregnant women are screened and given RhoGAM injections if they are RH negative, intrauterine fetal blood transfusions for this reason are not very common—less than 10 in 10,000 pregnancies will need it.

In pregnancies without hydrops fetalis, the survival rate is high— between 1 to 2 of transfusions will result in a loss, said Dr. Stephen Vermillion, a maternal fetal medicine specialist at Spartanburg Regional Healthcare System in Spartanburg, South Carolina

Yet in pregnancies with hydrops, loss is more common. In fact, a study in the American Journal of Obstetrics and Gynecology found that 39 percent of fetuses with persistent hydrops and 26 percent who were classified as severely hydropic who had the procedure survived.

Since both the parvovirusB19 and RH incompatibility can persist, fetal blood transfusions may be done three or four times throughout a pregnancy.

After delivery, some babies need more transfusions because there’s a risk that it could take months for them to make their own. Fetal blood transfusions are also done when a baby is at risk for developing a low platelet count, a condition known as neonatal thrombocytopenia. 

The procedure may also be utilized in pregnancies with twin-twin transfusion syndrome, in which babies share a placenta. Since the donor twin dumps all of his blood into the recipient twin, the donor twin becomes anemic. Although hydrops fetalis can be caused by anemia, in this case the recipient becomes overwhelmed and develops hydrops fetalis, Vermillion said.

A blood transfusion for the donor twin is then done at the same time as laser surgery to tie off the blood vessels that leak blood to the recipient twin.

“When you remove that connection, you have in essence removed the cause of anemia,” Vermillion said.

As with any procedure, a fetal blood transfusion carries risks, although they are small. Premature rupture of membranes occurs in about 1 out of 500 pregnancies. There is also the possibility of emergency preterm delivery, bleeding which can cause the baby to become severely anemic or a blood clot that can cause fetal distress, Vermillion said.

A happy ending
At 23 weeks, Hauge underwent an intrauterine fetal blood transfusion, but the procedure proved challenging.  Since her doctors had trouble accessing the umbilical cord, they had to transfuse a small amount of blood into the baby’s liver and abdomen. Transfusions through the umbilical cord vein are preferred because they have a higher rate of absorption and higher chance of survival, Vermillion said.

After two hours, her heart rate started to slow down and they were forced to stop yet the transfusion was a success.

“They did an ultrasound the next morning and immediately she showed drastic signs of improvement,” Hauge said.

Within a week, the swelling was gone and the baby’s signs of heart failure improved by 28 weeks.

At 34 weeks, Hauge delivered a healthy baby girl they named Anni.

Now, 3 years old, Anni has some breathing, feeding and growth issues, and doctors say it’s unclear whether they are related to the hydrops or not.

“She’s spunky,” Hauge said. “I can’t imagine what would have happened if I never got to have her.”

Julie Revelant is a health journalist and a consultant who provides content marketing and copywriting services for the healthcare industry. She's also a mom of two. Learn more about Julie at revelantwriting.com.