A young Omaha couple was ecstatic when their twin boys were born in March. But excitement soon turned to fear when one of the boys was diagnosed with a rare brain disorder. The only possible fix was to remove or disconnect half of his brain.
It was also a happy start for first time grandparents Mike and Paula McDonald. Two beautiful twin boys were born to their son, Dan McDonald, and daughter-in-law, Brianne, on March 18th. It's a story though that soon changed.
One of the twins, Conor, was thriving, but for Aaron something just wasn't right, as doctors soon found out.
"He said oh my gosh, this is something and they took him to another room where they could do more intensive care," explains grandfather Mike McDonald. “He stopped breathing. He had a seizure and he stopped breathing, but they were there right on the spot and they revived him right away."
But Aaron’s family tells Channel 6 News doctors at Bergan Mercy just couldn't figure out what was wrong with little Aaron. Then he was taken to Children's Hospital and Medical Center of Omaha. That’s where, says his dad Dan, Aaron was finally diagnosed.
"Infantile spasms, which is a specific kind of seizure in infants where they crunch, they bring their arms and legs toward the middle of their body as they're having their seizures." And it has a name - Ohtahara Syndrome.
The left side of Aaron's brain was malformed.
Dan McDonald says, "you go from being so excited that you have two sons born, and then you go to that drop-off-a-cliff feeling of horrible sadness when you find out what's wrong."
Doctors say little Aaron was having up to 200 seizures a day, and surgery was the only possible fix. But it was risky. The family headed to the Children's Hospital in St. Paul, Minnesota, where in a 12-hour operation on May 7th, neurosurgeon Dr. Mary Beth Dunn removed part of seven week old Aaron's brain.
"Now they don't take out the entire brain, but they do remove part of it, and they disconnect the other parts. And then if the right side is not specialized yet, it's able to partially or fully pick up functions. Yeah it's a miracle, it is," says Mike McDonald.
And still in Minnesota, Aaron is proof of that miracle every day. “To going back to knowing that your son is going to have a life again, it's a blessing," says father Dan McDonald.
Aaron's father says his son is already grasping things with his right hand, something normally controlled by the left side of the brain. That means his right side has taken over for the part removed. And Aaron has not had any seizures since the surgery.
Ohtahara Syndrome is very rare, and Dan McDonald wants to get the word out to other parents that it exists. The family has set up a Facebook page if you would like more information. Just click here.
The medical bills for Aaron, as you can imagine, are huge. There are accounts set up to help the family at First Nebraska Educators Credit Union under Aaron McDonald and Mutual of Omaha under Dan and Brianne McDonald.