On July 3, 1997, I went to the hospital to have a planned C Section delivery of our 3rd child, a girl, Lacey Allegra Warner. I was 38 years old at the time Lacey was born so during her pregnancy my doctor did many tests for abnormalities and found NONE. We all thought I was having a healthy baby girl. Lacey was born at 7:05 am on July 3, 1997. Great color and so beautiful. I spent 4 nights in the hospital due to my C Section. The day of discharge the doctor came in to talk to us about our baby. Everything was normal except for her left ear. It was a bit deformed and the doctor proceeded to tell us that this could also mean there may be kidney issues in the future. I was not too concerned, as I just wanted to go home with our new baby and to be with our other 2 children.
Steve, my husband, was a bit puzzled and said, “I have a feeling that something is going to be wrong.”
Back home we arrived to a decorated house with a HUGE stork out in our front yard and Lindsey (age 11) and Logan (age 23 months) running out to see their new sister. We were finally a family again (but not for long). Lacey enjoyed sitting in her swing. She was such a good baby. She never cried, always slept, and didn’t wake in the middle of the night to eat. I would wake her to feed her. She seemed to always sweat a ton, though. I was always changing her sheets in the little crib next to my bed. Little did we know that these were signs of heart failure. Lacey seemed to have a cold and a very runny nose so at age 2 weeks we went to the doctor for our 2 week checkup. I mentioned the runny nose. The doctor gave me some PediaCare drops for her. She also told me that she heard a heart murmur but that it was normal for babies to have this and they usually outgrow it. We had another appointment in 2 weeks for another checkup.
Two weeks later we returned and they listened. The murmur was not gone–it had worsened. This was a pediatric practice of all women doctors and was the BEST in town. We were able to get in with the new doctor who just was out of medical school and finished her residency and had joined the practice. She still heard the murmur and called several other doctors in to listen to Lacey’s heart. She scheduled an echocardiogram (an ultrasound of her heart) to be done the next week and told us that there was a chance that Lacey may have a small hole in her heart and that it may need surgery or may close on its own. Well, I was HORRIFIED! When I look back at the big picture, I only WISH it was a hole in her heart! One week later we were at the hospital for an echo. At first the technicians were always so talkative and laughing and then they began to get very quiet. They finished and we had an appointment to meet with our doctor an hour later. As we walked out Steve looked at me and said, “Debbie, I have a feeling something is wrong.” I, too, began to worry.
We arrived at the pediatrician’s office after hours, but she was waiting for us. We walked in and she was in tears. I knew that I better start crying if she was. I asked if Lacey had a hole in heart and the doctor said no, but she has Truncus Arteriosus. She had books all over the room and tried to explain what this very rare and complicated defect was. I was crying and not even understanding or listening. Steve was trying to grasp the information. Then I asked, “Does she have to have surgery?” She looked at me and hugged me and said yes.
Health Net Fixed Wing jet was waiting at the hospital for us and we had one hour to get over there and they would then transport Lacey and one parent to the nearest hospital that was equipped to handle this type of surgery.
I just about lost it. I was numb. I was angry. I was blaming myself for being 38 years old and having a baby. I was a total wreck.
We arrived home and told the babysitter, a good friend of mine, that we had to go. I was throwing things in a suitcase and crying and just so scattered. Our other 2 children were listening but we didn’t think too much. We walked out that door and never did we think we would not return for 5 months. Steve drove us back to the hospital and as soon as we walked in a team of doctors were there waiting and grabbed, poking and starting IV’s. They put Lacey and I in the ambulance and we were off to the airport to get on the jet. Steve drove 3 hours down the interstate to get to hospital. Lacey and I arrived at the hospital 30 minutes later.
They assured us that we had great doctors to take care of us. Two weeks later after they fed Lacey high calorie formula and let her grow, Lacey underwent her first open heart surgery! She was 6 weeks old. It was the longest day of our lives! The hardest part was handing her over to the nurse to take into the operating room. At 5:00 pm they told us that Lacey was out of the OR and that we could see her in 1 hour.
When I walked in the PICU (Pediatric Intensive Care Unit) to see my baby, I just about fainted. She was connected to tons of infusion pumps and, because her surgery was so complicated, her chest was left open until the swelling went down. They covered her up because I could not look. Steve looked at her little heart inside her chest beating. Our family was all there to see her, even the kids. They both reached over and gave her a kiss. It is VERY important to make the siblings a part of the sick child’s hospital experience.
To make a very long story a bit shorter, Lacey encountered many obstacles and had many setbacks during her 5 month stay in the PICU. She had a stroke, heart attack and ended up with a feeding tube. This is NOT the normal with all Truncus kids. Please do not think that. We were in a hospital that had really never saw Truncus and did not have a lot of experience in this. If you know that you are having a baby with a heart defect during your pregnancy DO RESEARCH on different hospitals and find statistics. Some hospitals are more experienced than others as we found that out as our story continues.
We arrived home in December and thought all was well! Deep in my heart I had a BAD feeling. Something was not right. Lacey was on tons of meds, a feeding tube, and on constant oxygen. We were so happy to be home though. We had a really cute medicine schedule all printed up and it just became part of our daily routine. We lived 2 hours from Steve’s parents’ house and 3 hours from our local hospital. For Easter we decided to go to Steve’s parents for the kids’ school break. As I tried to feed Lacey through her tube she would scream and cringe. The next morning she was just not herself. She was almost 9 months now. She became very lethargic and very discolored. Steve told me to put her down for a nap, that she was probably tired. I said no and that I was taking her to the hospital. I called the doctor and they told me to meet them in the emergency room. I had Steve’s mom go with me so Steve could be with our other children. When we arrived in the ER Lacey actually died in my arms. They worked to bring her back and rushed her to the PICU. A nurse told me “Lacey is very sick,” and that she was not sure how this was going to turn out. We knew all the nurses there. Lacey’s second admission into the PICU was 2 months. Again our family was split up, kids with grandparents and Steve took more time off his job.
After 2 months I became very angry and told the doctors that I was not going to live like this and let my baby just lay there not knowing what was wrong. I was really becoming depressed. Lacey’s heart surgeon sent her information to a good friend at Boston Children’s Hospital for a second opinion.
One week later Lacey and Steve were on the jet, this time to Boston. Steve called me after the first day there and after the heart catheterization to tell me that they found her problem and that they would have to re do her open heart surgery all over again. I flew to meet the team of doctors and was impressed. I had confidence and kept telling them to fix my baby so we can go home. The doctor who was going to do the surgery said that it was going to be difficult getting into her chest as the artery was sitting right up against the bone. Lacey also had poor access for any IV’s as she had so many cut downs!!
One of the cardiologists assigned to Lacey listened to me ramble on and cry, and on the day of surgery she was so supportive. We had a wonderful liaison nurse, too, who was so kind and understanding gave us updates every 30 minutes to an hour. We are so thankful for each member of the medical team who worked on Lacey. Surgery went well. The surgeon came out and drew us pictures and explained everything. Lacey was in CICU (Cardiac Intensive Care Unit) for 4-5 days because they did not have a bed on the floor. She did it! We went to the floor and stayed for about a week. We began feeding her foods with a spoon and we had so many people and therapists work with her. We arrived home 2 days before Lacey’s first birthday! What a first year we all had.
My advice is keep strong, keep faith, never give up and don’t be afraid to ask questions. If you are in doubt, speak up. Be involved in your child’s care.
We have learned so much from this experience and how to be an advocate for our little girl. Do research and give your child the BEST! We thank Lacey’s great team of doctors, nurses and therapists at Boston Children’s Hospital. Lacey is now 8 years old. She did great after we returned home from Boston. The stroke she had in the beginning did affect her brain and she is mildly delayed. Her G tube is out and she eats anything! She attends a normal school and is in special education 70% of the time. She has tons of friends and is very popular at school. It was hard to send her off to school, but when I see the excitement in her as the bus pulls up in front of our house, I know I cannot be selfish!
You have to treat your cardiac child just like you treat your other children. Try to make their life as normal as possible.
Our other 2 children understand Lacey’s needs. They were involved throughout the whole year. Logan goes to Boston with us for Lacey’s checkups and the doctors know him too. He has learned a lot. I have to say, I experienced a lot of stress through all this. It was not easy. I did see a doctor in Boston who prescribed some meds to help me cope, and I tried to walk a lot and exercise. I had a very supportive husband who was there every step of the way. We were a team!
I also started a Care Page from the link at the hospital that was wonderful. We posted pictures daily of Lacey so everyone at home and in her class could see her each day. I looked forward each day to reading the messages posted for us. Here at home I go to the gym each morning and spend 2 hours exercising. It is the best thing for you. I did suffer from Post Traumatic Hospital Syndrome, as well. The meds did help with that, too, for about 2 weeks after being home. I no longer take meds. I exercise!
Lacey just underwent her 3rd open heart surgery on September 20, 2005 to replace her pulmonary artery conduit that she outgrew! The surgeon did a great job and Lacey bounced back so fast. Our family has been through a lot and it changes you forever. We love to vacation a lot and do fun things. We take each day one at a time and try to deal with whatever is given to us. We have a great faith in the Lord above for helping us through all of this. NEVER GIVE UP! We knew that we were in good hands in Boston and if they could not help Lacey then in our hearts we knew that we gave her the BEST possible health care. We know that we will face more surgery, hopefully not for another 8 10 years!! We have faith and know we are in the best care at Boston! We hope with new technology that maybe there will be a new way to replace this artery!
Updates on our family: Lindsey is now 20 years old and a junior in college majoring in psychology. Logan is now 10 years old and in 4th grade and is a big time snow skier and Boy Scout. Steve is now a Federal Prosecutor in our home state. Debbie, a stay at home mom with tons of laundry to do and an advocate for Lacey! And the star of the show…
Lacey, is 8 years old and in 2nd grade and has a boyfriend named John and LOVES school and life itself!