Angela

In January 1995 I had a routine ultrasound, which seemed to take forever. I asked the technician if there was a problem and she said no, the baby is just lying funny. When my OB-GYN told me the following week that they were having problems seeing the baby’s heart, I was convinced the real problem was their equipment.

But it wasn’t. The next day I found out my baby had a serious heart defect, hypoplastic left heart syndrome. The doctor was pessimistic as he discussed the condition, telling us that the options were either a heart transplant soon after the baby was born or a series of three open heart surgeries, which didn’t have a good success rate. I was devastated.

On Valentine’s Day 1995 my husband and I were given our first glimmer of hope. We met with Dr. Angela Sharkey at St. Louis Children’s Hospital, who did an electrocardiogram on my daughter. Our daughter’s condition was formally diagnosed as hypoplastic left heart syndrome with an unbalanced AV canal. Dr. Sharkey confirmed that our choices would be a transplant or the Norwood surgery route, but she was more upbeat about the outcomes. Both were dangerous, but she knew children who had survived and were now rambunctious toddlers or attending school. My husband and I began to feel that maybe things would work out.

The next four months were agony, but Angela finally arrived on June 19, 1995. I spent a few minutes with her before she was whisked away to the NICU at St. John’s Mercy Medical Center. I was then wheeled to the NICU for another 30 minutes. Then she departed for St. Louis Children’s Hospital, and I joined her 24 hours later.

When Angela was a week old she had the Norwood procedure. The doctors told us how everything should go, and then told us to be prepared for anything, especially within the 48 hours following surgery. However, her recovery was like clockwork, very uneventful. I was so relieved. I only feared taking her home with a feeding tube (an NG tube), and having to learn how to put it in and feed her through it.

Angela came home from the hospital when she was three weeks old. My 22 month old son didn’t quite know what to make of her, but decided it was time to start using the potty –he didn’t want to be wearing diapers like the baby. So we were tube feeding, pumping breast milk and potty-training, all at once. Life was crazy!!

However, Angela thrived! She grew, and when she was three months old I went back to work. I had to – I carried our health insurance, and it was great insurance. My aunt, who also has heart defects (Ebstein’s anomaly and deformed valves from rheumatic fever), felt a bond with my little girl and agreed to watch her while I worked. It was wonderful. My aunt was so good with her that even today I tell my aunt there is a little “Solomon” in Angela (their last name).

When she was five months old Angela underwent her second surgery, the Glenn Shunt. Her blood pressure was high following the surgery, but after two days it was back to normal. Angela handled it well emotionally, except she cried every time she saw me, as if to say, “Mom, how could you let them do this to me?” I felt so conflicted, but I knew she had to have the surgery.

At Christmas of that year, when she was six months old, she sat up for the first time. She continued to grow, and was at the low end of the height and weight charts. She had horrendous reflux. We continued to tube feed her, and she refused to eat or drink through her mouth. The doctor’s recommended we switch her to a g-tube, through her stomach, and so on Valentine’s Day 1996 we were again at St. Louis Children’s hospital, this time for the installment of her g-tube. After that surgery we went to her room and she turned up her nose and looked away from my husband and I – she was furious. This time I was amused. She was such a fighter, she had so much spirit!!

For the next few years she continued to grow, and slowly she was weaned off of her various medicines, Captopril, Lasix, digoxin and Aldactone. The reflux continued unabated, until we began feeding her through a kangaroo pump overnight. That helped, but we still had several visits to the hospital for dehydration due to her reflux.

Around 18 months of age, the reflux went away, and when she was two my aunt said she couldn’t watch her anymore. Angela was too active for her!! This was a nice dilemma. I spoke to Dr. Sharkey, who told us we could put her in the same daycare as my son. Angela was thrilled!!!! She loved being around the other children, and for the first time was just one of the kids! She ate somewhat better too, sitting at the small tables with the other children. I like to think it was the peer pressure that helped! However, we still had to feed her overnight with the Kangaroo pump, because she couldn’t eat enough to keep up with her raising metabolism to grow.

When Angela was three years old we faced the final surgery in the Norwood series, the Fontan. She went in for her cardiac cath, and had complications. She began bleeding internally, and ended up in the Intensive Care Unit. We had prepared her for the cath and then Fontan, and she was very upset when plans changed and the surgery was postponed. She became very depressed. There was a July 4th party at the hospital, and we took her down to it and she turned her head away and wouldn’t have anything to do with it. I felt so bad for her, and was extremely worried about how she would react when she returned for the Fontan surgery.

Angela with her surgeon, Dr. Huddleston

She had it a few weeks later, and everything went well. She was out of the hospital in a week. She was grumpy the whole time, but that was ok. I certainly couldn’t blame her!! I stayed with her the whole time, and our relationship, already very close, was strengthened. I now had a “shadow” who followed me around the house.

It was strange, getting used to life without surgeries to anticipate. The only medication Angela took was ½ a baby aspirin a day. She returned to the daycare a month after her surgery, and bloomed. She started growing, and eating. Within six months the feeding tube was removed from her stomach. She was emerging into a regular little girl.

That’s what she wanted to be. She had a best friend. Her teacher told me she got along with everyone. She played house in the house area, climbed on the monkey bars and just blossomed.

She was very sensitive to others. My grandmother was in a nursing home, and Angela loved to visit her and hold her hand. Although her memory was failing, my grandma would remember these visits and tell people about the little girl who came to see her.

Angela couldn’t wait to start going to regular school, like her big brother. Nicholas is very bright and interested in science, and as a result Angela developed a love for science, too. We began to go on family vacations, and every one of them included at least one science center. Angela made more friends, and kept the friends from preschool, who she still sees and plays with today.

She was rarely sick (I contribute that to nine months of pumped breast milk). Her teachers have all loved her. Only last year did she struggle, and her teacher said she thought it was the first time Angela was really challenged. She’s strong academically, and in the third grade tested into the gifted program at Parkway.

I have a normal girl with a funny heart, as one of my friends puts it. She’s a Girl Scout, a member of her school’s Service club, and loves to play Animal Crossing on our game cube. She used to play soccer, volleyball and softball, but now prefers to read and watch scary movies.

The only challenge we’ve had recently is gym class. Her teacher has them run the mile, and there is much pressure on the children to get the President’s Certificate (I think that’s what they call it). I spoke to her teacher about making some allowances for her, and he was willing to do so. She refused, saying she thinks she can do it. At least now, though, her teacher understands and watches for fatigue, and he’s sensitive to her pride.

My only concern is for what her future holds. So many doctors early on told me she may need a heart transplant some day because she has the weaker half of the heart.  She asked me if she’ll ever have more surgeries, and I told her I don’t know. Several children she has known have died, and that is hard for her to face.

However, she is a strong girl. She goes to her cardiologist once a year for an echocardiogram. Other than that, she likes school and wants to be a science teacher when she grows up. She has many friends, and is a happy “tween,” with her teen years ahead.

That’s my Angela. I am so proud of her.

Angela

November 2006 Update

Just an update... Angela discovered her story was on the CHIN website when she found me answering an email from someone who had read her story. After she looked over the site, she said, "MOM! That's really old!" I guess, to an eleven-year-old who's now in middle school, the comments about her in fourth grade are "old." So at her request, I'm writing an update.

Middle school is a challenge for Angela. She's doing well academically, however, received almost straight A's on her first report card (except for a pesky B+ in math). She complains about homework (what kid doesn't?) but has made many new friends while keeping the old ones. She seems very happy.

The good news is that my concerns about her are pretty much the types of concerns you would have about any girl her age. One night she got weepy and said she was lonely, and I pulled out a book of Emily Dickinson's poems and we looked over a few (like "I'm nobody. Who are you? / Are you nobody too? / Then there's a pair of us, don't tell / They'll advertise, you know..."). I love that we can have these conversations. She's at such an interesting age. She loved "Happy Feet" (a penguin movie), but when asked recently what her favorite movie was, said "Alien vs. Predator." She's become more assertive and tells her older brother he should get more sleep and start working on his homework earlier—you can imagine how well that goes over :-) .

For the parents of little ones with HLHS, I hope for you the "normalness" that we experience now. One thing this journey has taught me is to treasure every day with my children, and not to get caught up with constant worrying. So I try not to sweat the small stuff, which can be tough when their rooms are a mess and they don't pick up after themselves. (I do get on them about these things, though, and they roll their eyes.)

And when Angela says, "I'm hungry," an hour after she's had supper, I think of the time when I was attempting every trick under the sun to get her to eat, and I think...life is good!!