We had three healthy children and always wanted a fourth. But after 3 miscarriages and 8 years, it did not seem that it would ever happen. What a surprise when, within days of my 40th birthday, we found out that I was pregnant!
After an uneventful pregnancy and easy delivery, we introduced our new baby, Drew Thomas, to his siblings. Lauren, 12, Julia, 10, and T.J., 8 were delighted to meet the little guy. But the kids sensed, before I did, that something was not right about this baby. "His feet are so purple, they scare me." "It looks like it's hard for him to breathe." I told them everything would be fine, it was, after all, his first day of life on his own. But as soon as the kids left the hospital, I asked the nurse what she thought.
Before Drew was 24 hours old, he was transferred to the Children's Memorial Hospital and within 48 hours of his birth, we had the diagnosis, hypoplastic left heart syndrome (HLHS). HLHS meant that the left ventricle, “the pumping chamber” of the heart, was not working. The treatment options are either a heart transplant or a series of three open-heart surgeries. We opted for the surgeries that would basically reroute the blood flow so that he could function on a two-chamber heart. Drew had his first open-heart surgery, the Norwood, when he was just 6 days old. Several weeks later, he finally came home with us.
We were told that his second surgery would be when he was about 6 months old. Things seemed to be going fine, but just 2 months after coming home, Drew started showing signs of heart failure. His lips were blue and his skin had turned a dusky shade of gray. I took him to the emergency room one day. We were told that he needed his second surgery, the Glenn, much sooner. He was scheduled for a cardiac cath the next day. Coming out of the cath lab, he had complications and he was immediately rushed to the operating room. Drew’s recovery from the second surgery was slow, and he came home on several meds and oxygen.
Drew’s third open heart surgery, the Fontan, was at the University of Michigan in July of 2001. Again, Drew’s recovery was slow and he battled pleural effusions (fluid around the lungs) for many weeks. He ended up having six chest tubes to drain the fluid from around his lungs. Two months after the Fontan, a cardiac cath was done to try to understand why he was still draining. In the cath lab, a stent was inserted to hold open Drew's left pulmonary artery and he was finally back home, 75 days after his Fontan surgery.
Things were going fine for a couple of years and then in September 2004, Drew was diagnosed with PLE, protein-losing enteropathy. PLE is a condition that is sometimes seen in patients that have the Fontan circulation. It was a very frightening time because PLE can be another life-threatening condition. Thankfully, Drew’s PLE was managed at home (not in the hospital) using diuretics and a high-protein diet. Once he was stabilized, Drew had a cardiac cath done to open the stent in his LPA, and within a few weeks the PLE was gone!
Drew’s biggest other challenge is a moderate to severe hearing loss that necessitates that Drew wear hearing aids. The exact cause of his hearing loss is unknown, but given the amount of time spent on hospital machines (heart-lung bypass and ventilators), medication, and the amount of time that his body had low oxygen saturations, we are told his loss is not surprising.
As for how he is now, Drew is still the happiest, most vivacious, and wonderful little guy. He has always had more smiles and laughter and love in that tiny half-a-heart than anyone I know.
Drew’s is a far different outcome than my own sister experienced. She was born 40 years ago with HLHS, and as a “blue baby” with no treatment options, she only lived 3 days. I have experienced firsthand the advances made because of CHD research, yet I know we have a long way to go.
— Martha and Tim, Drew's Parents (Evanston, IL)