My story started out in the totally normal way: I had all the usual amazement of my huge belly during a normal nine months of pregnancy. Childbirth was amazing and magical for me, but totally routine by hospital standards.
Hannah's first nine months were delightful. I still remember that during that time the most troubling medical condition I was worried about was that she stuck her tongue out so much. I actually thought I would ask the doctor about that a few months later during her one-year checkup.
We never had that checkup. By the time Hannah turned one she had a raft of doctors, and her tongue was not an issue for any of them.
It all started one January day. We were going to a lunch date, and Hannah fell asleep during the long drive, something I was happy about because it was part of her regular nap routine. As recommended by everyone, she was in a rear-facing car seat.
Then something went wrong with my car. It had always been a reliable car, so I was pretty annoyed that I had to pull over. Looking back, I will always be thankful that the car did break down, and I wonder if someone upstairs caused the car trouble, because when I got out, what I saw made my heart sink. She had thrown up, and her eyes were rolling back into her head. Her head was swaying back and forth in a totally unnatural way. I knew immediately that something was wrong. Really wrong.
Hannah woke up some but still wasn't herself. A friend drove us up to Hannah’s pediatrician. After a couple of hours, he sent us to a nearby hospital.
Before we went for that drive, Hannah was a normal, active, nine-month-old. Now she was barely able to stay awake.
The hospital did everything they could think of to help my baby: MRI, Cat scan, Spinal Tap, Oxygen, IV, Blood draws, ect… But nothing seemed to work and she seemed to be getting worse, not better. At this point Hannah was near the point of going into a coma. She had blue lips and black circles under her eyes. With nothing else they could do, the hospital ordered us an ambulance and sent Hannah to Children’s Hospital of Denver.
It was late at night. We got settled in the NICU (neonatal intentensive care unit). Then a couple of hours later I noticed someone in a uniform watching Hannah closely. All of a sudden all the lights came on bright. Around 10 people in uniforms surrounded Hannah’s bed while a nurse took me to the side and said that my baby wasn’t breathing on her own. She told me that they were going to stick a tube down her throat. The tube would be hooked to a ventilator which was a machine that would push air in and out for Hannah. Hannah went back to sleep, but I could barely hold her hand for all the equipment around her.
The next day, Hannah became a little more responsive. With this energy she did what all kids in that situation do, she kept trying to rip the tubing out of her mouth. The tubing that was keeping her alive. The nurses explained to me that they had to tie Hannah’s hands to the bed posts to keep this from happening. So then I could only hold her hand as she looked up at me, trying to understand why she was in such misery. I fought to hold back tears in front of her.
Then began a parade of specialists. Every day or so a Neurologist, or an Oncologist, or a Hematologist would come in, examine her, ask me questions, and order tests. Then we would wait for the results of the tests. Every time the results came back negative. She didn't have something that could be cured with surgery or pills, but she still just wasn't breathing enough.
During this time, I never left the hospital. I was by Hannah’s side, or sleeping in the mother’s room in the hospital. Family members and friends came, and we cried many tears in the visitors rooms, and then I would go back and hold Hannah's hand and try to smile, read books, and make things seem as normal as possible for a girl tied down to a bed with massive amounts of tubes and wires everywhere, and strange lights and alarms all around.
After everything else had been ruled out, Hannah's attending doctor in the NICU, Dr. Moroney, had THE talk with us. He said that he spent some time at home on his day off and might have finally found what was causing Hannah's breathing troubles. He figured out that she had a rare disease called Congenital Central Hypoventilation Syndrome (CCHS). It is sometimes called Ondine's Curse, named after an ancient myth about a curse in which the subject can only breath while awake. If the person goes to sleep, they die.
Dr. Maroney explained that in his research he found this disease was so rare that there were about 400 people in the world who had it. Some needed a ventilator to help them breath at night, others 24/7. There was no cure, he told us. Hannah would need a tracheotomy, and a ventilator, and she will likely need a ventilator for the rest of her life. He said that this would be a life long marathon for us, not a sprint.
This was certainly bad news, but in some ways I was also relieved. I know knew what the path was to "normal" for Hannah, and I wanted to get on that path. I wanted the surgery to cut a hole in Hannah's throat as soon as possible, and I wanted to move on.
The Children's Hospital worked hard and got Hannah an appointment that Friday. Some of you may know the pain you go through when your baby is wheeled into surgery. Although putting in a trach is a very easy surgery, the clock ticking and tickling and ticking is almost unbearable.
Hannah made it through with flying colors and by the next day, Hannah was visibly coming back to life. She started looking and seeing me again. She started moving her legs, tracking people and actually smiling. She seemed so happy not to have a tube stuck down her throat anymore.
At the time, my baby had so much tubing connected to her that it was hard to hug her. But on the next day, Sunday, our nurse, Laurie, took the time (and I mean time) to get Hannah situated enough to let me hold her for the first time in weeks. It was one of the greatest moments of my life.
Then we were moved to a recovery room. Before we had witnessed the brilliance of Children's Hospital in keeping Hannah alive, diagnosing her rare condition, and laying out a plan to get home. In the recovery room, however, we started enjoying the magnificence of Children’s Hospital. Almost every day Hannah would get a present from the volunteer department. Sometimes it would be a huge stuffed animal. Sometimes it would be a box of crayons and a coloring book. The hospital had game rooms where Hannah and I could go and play games, or play with playdough. Once a clown came in to visit. Once a cheerleader came in to give Hannah a necklace. The magic of the Children’s made the next few weeks survivable.
Those few weeks were filled with specialists, each training all of Hannah's family how to care for our baby with this new reality. We had lessons on mechanical gear that would keep Hannah alive. We had swallow tests, function tests, ventilator tests, CO2 tests. We had the most incredible, amazing, gifted, caring staff in the world that worked with us and with Hannah, and taught us how to take care of our daughter. We had a lot of high tech gear, but we always felt confident with the support of the hospital and especially for us the pulmonary department.
As the years have progressed, the pulmonary, ENT and the sleep lab doctors and nurses have become, at times, as important as our family. I would do anything to support the hospital and the people who gave my daughter back her life.
Now Hannah is a healthy, intelligent, lovely, gifted and amazing girl. She still has a trach, but it's now attached with a string that looks a little like pearls. We girls do love to accessorize. She still needs some extra care, of course, but she can actually hook up her vent herself each night, and we talk with Children's Hospital Staff all the time about how to help her develop and grow into her full potential. I'm confident she will grow into a bigger and better version of the wonderful girl she is now.
One time not too long ago, I asked an expectant mom if she was having a boy or a girl. She said she didn't know, and wasn't planning on finding out. She said she'll be happy as long as the baby is healthy. I thought -- but didn't say -- that it will be OK even if the baby isn't healthy. It's not easy, but you can still be very, very happy. I know I am, and I know Hannah is, too.
And just so you know, Hannah still sticks her tongue out a lot, and I never did ask the doctor about that.