~Welcome to Phelicity

In January of 1999, my husband Bo and I were surprised, but excited to find out we were expecting our first child. When we went for our routine 20 week ultrasound, the technician scheduled me for a follow-up visit, telling me he couldn’t quite see everything. I left thinking it was no big deal. Little did I know that he was placing an emergency call to my doctor to tell him he suspected that baby Tom had HLHS. When I returned Monday for my follow-up visit, I knew right away that something was wrong. Several people came in to look at the ultrasound and nobody would tell us what was going on. When the radiologist finally told us that my obstetrician wanted to speak with us in his office right away, my stomach hit my feet. We walked quickly to his office, where he quietly told us about HLHS.

The next two weeks were spent waiting. I had an amniocentesis to rule out other genetic abnormalities and was set up for an appointment with a pediatric cardiologist to confirm the HLHS diagnosis. I spoke to a perinatologist and looked at some information on the web. Mostly, we just tried to keep busy until we could talk with the cardiologist and get the results of the amnio.

We met Dr. Schneider, Tom’s cardiologist, for the first time on May 20, 1999. He did a fetal echo and then quietly confirmed the HLHS diagnosis, explaining that we could be referred to the University of Michigan for surgery, or plan to provide compassionate care at home through hospice for Tom after he was born. He mentioned a heart transplant, but explained that this wasn’t the normal treatment option for HLHS babies at the U of M. He also told us that the amnio results showed no genetic abnormalities, which was reassuring. We listened and asked questions, then left promising to call Dr. Schneider with our decision. We walked silently to the car and as we were pulling out of the parking lot, we both looked at each other and said “surgery” at the same time.

Time seemed to alternately race and then crawl that summer as we prepared for Tom’s arrival. I continued to receive routine pre-natal care, along with monthly ultrasounds. We visited the University of Michigan to meet with Dr. Bove and tour the congenital heart center there. Some days I felt ready and anxious to get things over with. Other days, usually after an OB or ultrasound appointment threw me back into the reality of the situation, I would have a meltdown and wonder how I was ever going to get through this. I planted all of the flowers in my garden white for hope. I couldn’t decorate the nursery and I didn’t want any showers or presents. Mostly, I just tried to stay busy and think positively. I continued to search the web for HLHS success stories. The kind families who responded to my guest book entries at their websites really helped get me through. I would bookmark their pages and look at them when I felt scared or down.

After a failed induction and three extra weeks of waiting, Thomas Maxwell Stephenson finally arrived at 6:31 p.m. on September 22, 1999 weighing 9lbs. 2 ozs. They held him up for me to peek at and then took him to the cardiologists who were waiting to start him on the IV medicines that would keep him alive until his surgery. Bo went with him and came back with some Polaroids for my family to see. Within an hour, he was “all hooked up” and we were able to visit him in the ICU.

Thomas had his Norwood on September 27 when he was five days old. Both sets of grandparents and all of his aunts and uncles came to meet him and visit before the surgery. The waiting was very hard and I spent a lot of time just watching Tom and crying. He was very stable and we were able to hold him and sit with him as much as we wanted to.

The morning of the surgery, my parents, Bo and I walked with him to the operating room. After they took him inside, we just stood together in a circle and cried. It was the hardest thing letting him go, and I felt so angry knowing there was no other choice for him. He came through the surgery well and recovered quickly in the ICU. The doctors were amazed by his progress and soon we were in moderate care and talking about going home. Tom did have some trouble with tachycardia (rapid heartbeat) that had to be controlled by special medications. He also came home with an NG feeding tube in his nose, like most HLHS babies.

Our first homecoming was short-lived. Tom developed NEC, a rare but serious form of colitis that put him back into our local hospital for two weeks. Once we got home the second time, Bo went back to work and my days were filled with doctors appointments, and visits from our home health nurse and feeding therapist. It was wonderful to finally get to know Tom without doctors and nurses constantly surrounding us. His biggest issue was feeding and we struggled and struggled to get him to eat by mouth. I was grateful for the tube, because I knew it was providing him with the nutrition he needed to be strong for his second surgery, but I worried constantly that he would never eat. We tried a million things to encourage him, but nothing worked. In hindsight, I think he just needed the improved cardiac function that the second surgery provided before he had the strength and the appetite to eat by himself. It was during this time that I discovered Little Hearts and became part of their on-line support group. Please check out their web-site for great information on HLHS and other heart defects.

This is Tom recovering at home from his hemi-fontan. His Aunt Lori is holding him up.

On Valentine’s Day, 2000 we headed back to the U of M for Tom’s pre-surgery cath followed by his Hemi-Fontan. It was hard turning him over to the surgeons again, but we were glad he had made it to the second surgery and were glad to know that the shunt placed during the Norwood was being removed. He came through the surgery quickly and seemed to be recovering well, although he was very fussy. The docs blamed the “hemi headache” and told us it would go away in a few days. Unfortunately, we got home and things got worse. For several days, Tom either cried or slept. We were up all night taking turns pushing him in his stroller so that he could sleep. One morning, about a week after we got home, his visiting nurse undressed him and we noticed that his incision had swelled up like the top of a turkey baster. He had a staph infection. We were rushed back to the U of M by ambulance where Tom had to have another operation to open his chest and clean out the infection. Somewhere along the way, he also picked up RSV. Two weeks later, he came home with IV antibiotics for the staph, oxygen for the RSV and the NG tube for feeding. It was one of our most difficult times. Luckily, Tom recovered quickly and soon began shedding the tubes and wires.

After the second surgery, Tom had to have tube feedings administered by pump every three hours. I stayed up until midnight to do a feeding, then Bo and I took turns with the 3 a.m. To stay awake, I spent a lot of time on the Internet. One night, I was browsing Oprah’s web-site to check our her book list and clicked on the “Be a Guest” icon just for fun. It said they were looking for stories of gratitude for an upcoming show and just for fun, I e-mailed them about Tom. I was SHOCKED a week later to get a call from one of their producers asking me to come and actually be on the show! They sent a limousine to our house from Chicago (a four hour trip) and we enjoyed a fun overnight in a great hotel on Michigan Avenue followed by appearing on the show the next morning. We took pictures of Tom at the studio and got Oprah’s autograph for his baby book. It was an awesome way to start off our “normal life” with Tom.

Here's Tom enjoying his first birthday cake. We celebrated with pig roast for 100 family, friends and caregivers who had helped us through the first year

Within a few months of the second surgery, Tom was able to get rid of his feeding tube and other than visiting the cardiologist every three months we had a very fun and uneventful year with him. He was assessed often by occupational and feeding therapists at first who finally just shrugged their shoulders and said, “Call us if you need us”. I was back to work part-time and we were enjoying all of our usual stuff, but in a new way. There is nothing good about HLHS…but good things have certainly come from it. We can value life and everything about it in a way that we couldn’t have had we not experienced HLHS.


Enjoying summer strawberries a few weeks before the third surgery	Recovering in the ICU after the Fontan. July 2001

After a cath in the spring of 2001 showed that Tom was a good candidate for the Fontan, we scheduled the surgery for June. It was very difficult to prepare for this surgery. I actually think that anticipating it was worse than the actual experience. Tom was so much a part of our lives that I couldn’t imagine anything happening to him. He was also old enough to show when he was scared or in pain which was different from the first two surgeries. Having been hit with unexpected complications after each of the first two surgeries also left us wondering what might happen this time. Fortunately, all went well and there were no complications. He stayed in the hospital eight days and within two weeks was acting completely normal. The hospital stay was tough, but we were lucky to have lots of help from grandparents, aunts and uncles. It was a huge relief to know that Tom had crossed the third hurdle successfully.

Here is the whole family plus favorite babysitters at the American Heart Association Heart Walk in September of 2001. This was also Tom's 2nd birthday.

Today we are enjoying a healthy, happy toddler. He loves music, tools, tractors, books and dogs. He has tons of energy and is constantly thinking of new ways to outsmart Mom and Dad. We’re looking forward to a fun summer of swimming, softball and sun followed by pre-school in the fall. We could fill this page with cute stories, but if you’ve read this far you’re probably TIRED. We hope you are inspired by Tom’s story and that you will contact us for more detailed information about our experience with HLHS and Tom’s surgeries at the University of Michigan.