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Helen’s Story

My pregnancy with Helen was fairly normal. The ob said he wasn’t sure about the sound of her heart when he checked at the last appointment before I went in to labor, but he was confident that everything was fine. When the labor failed to progress, the delivering doctor decided to go with a c-section. This is when it was first apparent that Helen had swallowed thick meconium and that something might be wrong.

Helen was taken to the newborn nursery and one hour later began to look pale; her vitals were dropping and she had to be put on a respirator. There was a nurse whose careful attention to Helen in the operating room and in the nursery probably saved her life. (We were able to thank this nurse in person two years later when we passed her as she was leaving the hospital and we were on our way in to deliver Matilda, Helen’s sister.) During this time, my husband and I were told only that we had, “a very sick baby.” We knew the doctors and nurses were doing all that they could, but they admitted it was discouraging to not know the cause of Helen’s problem.

They called Children’s Memorial Hospital and got in touch with Doctor Backer. He immediately diagnosed the congenital heart defect, total anomalous pulmonary venous connection, Type 1, obstructed. He said that she needed open heart surgery that day. The transport team did their best to provide me with enough time to say goodbye as they took my first born child to another hospital only hours after she was born.

Over the course of the next few hours, Helen was prepared for emergency open heart surgery. Her body was cooled and the procedure to reconnect her heart valves was performed and after she was brought back to normal body temperature, Helen was taken to the pediatric intensive care unit to recover. The pediatric cardiac nurse practitioners who work with Dr. Backer called me in the birthing hospital every half hour to report on Helen’s condition. They explained procedures and answered every question I had. They did the same for my husband who was at my daughter’s side as much as he was allowed. After a few days, I was allowed to join my family at Children’s Memorial. Over the next several weeks, Helen’s condition went up and down. She had many complications and fought very hard to live. Each morning, when I woke up to see the doctors checking in on Helen while doing rounds, I would ask, “Can she come home today?” and each day the doctors helped me to believe that the day would soon be there.

When Helen was eight weeks old, we were finally told that we could bring her home. We were taught how to feed her through an NG tube, how to administer IV antibiotics through Helen’s PICC line, how to administer her several heart medications and pain medications and how to secure and replace her nasal canula, which provided her with oxygen. We felt we were prepared. We were first time parents. For the next three weeks, Helen’s weight went down. We had tremendous difficulty in managing the home health care situation. Helen’s doctors at CMH helped intervene when our home health care company failed to deliver the correct items to save us a trip to the emergency room. They loaned us a brand new scale to weigh her with to save us daily trips to the pediatrician. Helen must have been in a great deal of pain because she cried all day and all night. She almost never slept. We bounced her while sitting on a yoga ball. We sang gently to her. We held her all the time. Almost all of our meals were delivered to us by friends. Friends took our laundry and brought it back. We focused all of our energy on our baby. We felt a determination to love our baby through the battle she was fighting. As it would happen, the battle to save our child brought my husband and I closer than we imagined we could ever feel.

When we brought Helen in for her cardiology appointment, we were told that she would need to be re-hospitalized. Her pulmonary veins had stenosed, or closed up, and she needed another open heart surgery. This time Dr. Backer and Dr. Mavroudis would do the surgery together. We were told that Helen had a much greater chance of coming through without complications. Four weeks after Helen’s second open heart surgery, on St. Patrick’s Day of 2005, we got to bring her home and Helen has not spent a full overnight at the hospital since. She has had a few visits to the cardiac catheterization lab (often the last stop before open heart surgery.) We were told last June that Helen would need a follow up surgery to correct further narrowing of her pulmonary veins. After the work that was done in the cath lab, the doctors changed their course of treatment and Helen avoided a third open heart surgery. She has a chest wall deformity and scars; but these do not bother her at all.

Helen is a 5 year old, happy and in almost all respects, healthy girl. She loves her family. She loves her dogs (two corgis named Lady and Levi). She loves computer games, especially Toon Town, which her Grandpa likes to play with her. Helen taught herself to read with a little help from Mom and Dad. Now she is teaching her sister to write her letters. She is learning to play softball and is a good hitter. When faced with a physical challenge, Helen focuses and doesn’t let anything get in her way. We were told that Helen would never be a “great athlete”. She seems determined to find out how wrong the doctors might be about that.

Written by her mother

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