A newborn was diagnosed with a disease so rare it has no name, and her mother just became her unlikely savior

Amanda LaValle was expecting a normal birth when she went to the hospital for her C-section in Pennsylvania. She already had two kids, Eliana who is 2 and Owen who is 7. Her past pregnancies were hard and painful, but her babies were always born healthy. She thought this time would be the same.

According to People, things went wrong right after baby Iris Hope was born. The newborn was having trouble breathing. Doctors quickly put a tube down her throat to help her breathe and sent her to another hospital in an ambulance. That hospital had a special unit for sick newborns. LaValle had just had surgery and was stuck at the first hospital while her husband followed their baby to the other one. She made the doctors let her leave early so she could be with her daughter.

When Amanda LaValle’s daughter was diagnosed with a disease so rare it does not even have a name, the mom of three was left in disbelief. At first, doctors thought Iris had a breathing problem that happens to some babies born by C-section a bit early. After one week at Children’s Hospital of Pittsburgh, Iris got better and went home. But she kept having problems eating and was not gaining enough weight.

A mother’s instinct proved life-saving

In May, doctors gave Iris a special formula to help her put on weight. But after a few days, she had a bad reaction and her body went into shock. She was rushed back to the hospital where doctors found she had a heart problem.

She stayed in the hospital for two weeks. Doctors did many tests but could not figure out what was wrong with her. LaValle works as a speech and language therapist and knows a lot about feeding problems in babies. She heard from a friend whose daughter had a rare genetic problem. That made her push doctors to test Iris’s genes.

“We pushed very hard and finally got them and insurance to approve doing genetic testing because Iris was essentially getting better, but we still had no idea what caused it,” LaValle told People magazine. “Which was terrifying to a parent of a little baby that just was intubated and in the pediatric intensive care unit for two weeks, and they’re saying nobody knows why.”

The test results came back in June and showed two genetic problems. The first one was something LaValle had passed to Iris without knowing she had it. It can cause bad reactions to some medicines used during surgery.

The second problem was much worse. It affects the parts of cells that give the body energy. Both LaValle and her husband carried this gene without knowing it. Iris is only the sixth child in the whole world ever found to have this exact problem. The other five kids who had it all died before they turned one year old. Their deaths were first thought to be from SIDS.

“Needless to say, that’s quite terrifying to know that your child has something that’s so rare and everyone else has died by 11 months old,” LaValle said. “But what we keep trying to remind the doctors, we try to keep positive and keep hope, but Iris is the first child that we’ve ever been able to try anything with for this.”

Since finding out about the disease, Iris has been back to the hospital many times. She cannot eat food by mouth anymore and gets fed through a tube. LaValle has had to do CPR on her baby two times. The first time, she brought Iris back to life before the ambulance got there. The family never leaves Iris by herself at the hospital, a level of care that shows just how hard medical work can be.

LaValle had to stop working to take care of Iris. She and her husband switch off staying at the hospital while also taking care of their two older kids at home. Iris is now 6 months old and has hit most of the normal baby milestones except for eating. She can roll over, smile, make sounds, look at people, and grab things. But no one knows what her future will be like, and doctors have told the family she probably will not grow up the same way as other kids.