Theo (left) and Tommy

Theo is our super miracle boy. He has had a rough course but has stayed amazingly strong-willed and happy through all of this...

Theo was born April 30th, 2001. He was 9 1/2 pounds and seemingly healthy. We took him home when he was two days old, but at four days old he was admitted to the hospital after he stopped nursing and peeing, was super irritable, and was breathing really fast. I had been brushed off as a "worried first-time mom" by the pediatrician on call that I had phoned in the middle of the night crying hysterically, but luckily we listened to our intuition and got Theo help when we did. We were told that he would not have survived through another night had we not taken him in. He was diagnosed with Hypoplastic Left Heart Syndrome, which basically means that the left side of the heart is so underdeveloped that it is non- functional. We had to choose between a series of three open heart surgeries or a heart transplant, but were encouraged to try the surgeries?which we did.

Theo had to recover from the "hit" he had taken at home while his body was slowly being starved of oxygen. His kidneys and liver had stopped working well, but luckily his brain stayed protected. Once his other organs showed signs of recovery, he had his first heart surgery, the Norwood, at 16 days old. During the surgery the cardiologist came to us and said that when the surgeon went in, he found more damage than he had thought. A hole between the atria which was helping Theo's unusual circulation work OK had closed almost entirely, and we were told that if he made it out of the OR alive, he would be "sicker than most" because of damage to his lungs. We later found out that he had actually crashed in the OR. However, strong little Theo pulled through and did really well, and we were even told by his cardiologist that he should be the "poster child for the Norwood"!! We came home on Theo's five week birthday.

Feeding difficulties followed. He came home with an NG feeding tube in his nose, which we replaced with a more long-term gastric feeding tube when he was five months old. At seven months old he had his second heart surgery, the Glenn shunt. He did great once again, and this time was only in the hospital for four days!!

Life went on, we got pregnant again and looked carefully at the new baby's heart, which was found to be 100% HEALTHY!!! When I was seven months pregnant we found out that the cause of the mysterious fevers Theo had been having for the past month was that he had Hepatoblastoma, a rare form of childhood liver cancer. He had just turned two, and it was totally unbelievable and mind-boggling to us that our little guy would have to endure a whole separate and horrible diagnosis. The doctors likened it to being struck by lightning twice, and had never seen a kid with Theo's heart condition as well as cancer. I will not go into much detail about the cancer here since this is a heart page, but he had many ups and downs and we almost lost him many times. The doctors are amazed that he is alive and has been totally in remission for 10 months now!! We had our new baby Tommy three weeks after Theo started chemotherapy. He is completely healthy, happy, and easy and is a ray of sunshine to our family!!

Theo's heart is doing great and has held up well through an intense liver surgery and a rambunctiously active 3-1/2 year old boy. He will have his third heart repair, the Fontan, in summer of 2005, once he is two years post cancer diagnosis. Theo is now totally off his feeding tube, is growing and developing really well, and is just like a regular kid his age. He is truly a gift, and his smile brightens the hearts of everyone he meets.