Kelly, with Olympic Gold Medal winner and swimmer, Misty Hyman! Misty is from Phoenix, our home town, and we are all very proud of her. She told Kelly to hold her medal.
Our daughter, Kelly, was born September 11, 1992. She was a very healthy and happy baby. Everything about her was perfect, she only cried when hungry and slept through the night. We were fortunate that I was able to stay home and care for her and her older brother, Joey. Everything was perfect until November 28, 1992.
It was a Saturday morning, two days after Thanksgiving, I had just recovered from the stomach flu; 7:00am Kelly begins screaming uncontrollably, which was not like her at all. My husband got up with her, tried feeding her, but she was inconsolable. I got up thinking she must have the flu that I just got over and gave her some Tylenol. It was obvious there was something much worse wrong with her! She abruptly stopped screaming and gasping for breath, much like you do after crying very hard, this didn't scare us as much as when she began moaning and then there were long gaps in between breaths. We called the pediatrician and told him about her labored breathing and inconsolably crying and he asked if she was breathing alright, which at the time she wasn't, but I thought it was from crying so hard. He told us he'd meet us at Phoenix Children's Hospital. On the way there my husband had to flick her chest with his finger to make her breathe because there were such long pauses in between breaths.
The triage nurse at the hospital could tell immediately there was something terribly wrong. We thought everything was alright after we arrived at the hospital, which was not the case at all! The nurse took one look at Kelly and scooped her up and whisked her away! We followed, with our 5 year old son in tow, into the emergency room and all sorts of specialists were being paged to the ER. Our pediatrician arrived, went into the area where they were working on her and came out and told us something was terribly wrong. They knew it was some kind of brain trauma, he asked if she's been dropped, this is where I was so thankful I didn't have a babysitter because I knew for a fact she had not. They knew it was a brain trauma because she was posturing and the part of the brain affected controls breathing, which is why the long pauses.
A CT scan was ordered, Kelly was intubated to assist her breathing, and we were ushered to a small waiting room to wait for the results. When they came back, the doctors sat down and told us of the "mass" they saw in her brain. It was either an Arteriovenous Malformation or more than likely, a cancerous brain tumor! The fact that she is only 11 weeks old led them to believe 99.9% that it was the cancerous tumor. As most of you already know, most bleeds, let alone hemorrhages, don't happen until the second decade of life. They told us they had to operate immediately, if it is cancer she probably won't make it through surgery, if she does then she will most likely not live a year! We were speechless, this was a healthy baby at 5:00 that morning when I fed her, and now the doctors are telling us they have to cut into her brain and if she lives, she will only live less than a year! We were allowed to go in her room to tell her goodbye and most likely not ever see her again! It was the hardest thing we've ever had to do.
Six terrible hours later the doctor came into the small waiting room where they allowed us to stay alone, away from everyone and told us the surgery went well and preliminary tests show that it wasn't a cancerous tumor, but a hemorrhaged AVM! Pathological results wouldn't be back for three days but it looked good! The doctor told us he had never heard of a baby this young with a bleed or hemorrhaged AVM, it was unbelievable!
Kelly got stronger everyday. The pathology report came back stating AVM residue, meaning the hemorrhage was so forceful all that was left was blood and tissue, Kelly's AVM was completely gone! She stayed in the hospital for 10 days. She had follow-up MRIs for 2 years, brain fluid filled up the hole in her brain where the AVM had been, in her Cerebellum. One year later, in November of 1993 she began physical, speech and occupational therapy at United Cerebral Palsy in Phoenix. She still attends therapies and is doing remarkable! She has global delays because of the damage to her brain but is slowly overcoming them. She attends a speech and language impaired class at her public school and hopefully will begin kindergarten in the fall of 1999! Kelly has a web page if you're interested in seeing her picture with some of her friends.