Every time I finish a yoga practice, enjoy a walk, go for a swim or simply feel strong and energetic, I owe it in-part to Boston Children's Hospital. A place that is so very near and dear to my heart, in the most literal sense.
Years ago, as a child born with severe heart defects, I was sent to Boston Children's for life-saving surgery. For my New England friends and family, this might not come as a surprise, but keep in mind I LIVED in SLC, Utah at the time. My story, writen by my awesome mother, is below. In short, I'm here today thanks to the amazing miracle workers at Boson Children's and Primary Children's (in SLC).
On April 28, Bernie and I will be joining more than 1,000 yogis at Gillette Stadium or an inspirational day of yoga, music, and fundraising - all to help bring peace and healing to others. All donations will benefit Boston Children's Wellness Program and Every Child Fund.
Please join me in supporting children and thier families as they recieve life-impacting care at Boston Children's Hospital.
Peace and Love,
Double Outlet Right Ventricle with Transposition of the great arteries, with ASDs & VSDs
by Christine Norton
Alexandra Norton, was born Tuesday, June 5, 1984 at St. Mark’s Hospital.
Wednesday, June 6, 1984 Pediatrician Dr. Dennis Ashton looked in on our new baby girl the morning after she was born. He came into my room after he had looked at her and said he had detected a “slight” heart murmur. Because my brother, and Alex’s father had both been born with a heart murmur, this went right over my head. She was beautiful in every way and had wonderful color when she was born. She was a picture of health. How could anything be seriously wrong with her? Dr. Ashton told me he would check again the next morning on his rounds and check back with me. Next morning he told me her murmur was even more pronounced, and he was concerned. He would check back the next morning before we were released from the hospital. Friday morning when he checked on her he reported to me that her heart murmur sounded even more pronounced and he had called Dr. George Veasy, head of cardiology at Primary Children’s Hospital, and asked if we could bring her directly to him when we left the hospital that morning. Upon leaving St. Marks Hospital that morning, we went directly to Primary Children’s Hospital to see Dr Veasy. He laid her out on my lap and unwrapped the blanket from around her. He spent a few minutes watching her breath, the simple movement of her chest rising and falling, paying particular attention to her neck or pulmonary artery flow in relation to her breathing. He looked puzzled. He sent us for an EKG and then an ultrasound, which were pretty new at the time, and only done in black and white. We then spent time with Dr. Veasy and the technician, as the technician attempted to tell Dr. Veasy what was going on with the blood flow in the heart. Finally, about an hour later, Dr. Veasy took us into another room and basically said, “Don’t get too attached, your daughter is very ill. She has a heart defect that only a fraction of a percent of all babies born with heart defects have. It’s very rare, and we’re just learning more about it. Then he explained the “double outlet right ventricle” to us, and went on to explain her arteries were transposed, or turned around, and there were two holes in the heart, one in the upper and one in the lower ventricles of her heart, which essentially were keeping her alive, because these holes allowed the blood to circulate in her heart. He told us not to let children under the age of 12 around her because they carried too many germs and it was very important she not get a temperature. A rise in her temperature would cause her heart to work too hard, and would not be good.
July 18, 1984 When Alex was six weeks old her pulmonary artery was “banded” to make it more proficient in its work. This surgery was successful. Dr. Veasy’s hopes were that this would “get her by” until she was at least five years old. At five years old her heart would be much larger and they would be able to make the corrections in her heart, and have a better chance of success.
1984 - 1989 We saw Dr. Veasy weekly for a while, then every two weeks, then monthly, until Alex was five years old. Alex was always very small, and very white or piqued. Her finger tips and lips were always a little on the blue side. We began to prepare her for open heart surgery by talking to her at night, when we would lay in bed with her before she fell to sleep. We would read the regular nighttime stories, and books that she loved, and then the lights would go out and we would say prayers, and then we’d just lay there and talk. We taught her to “relax” and take her mind to a swimming pool or the ocean, and pretend she were floating on a raft in the warm sun and gently bobbing up and down in the water on this warm raft and we would relax our toes and then legs and then arms and fingers and neck and shoulders. We taught her to breath deeply while she was relaxed. We explained the many different scenarios of what could possibly happen while in the hospital, and that she would need to cooperate with the doctors and nurses so she could come home quickly. We talked about needles and pokes, and that they were necessary, we even went to the hospital for an “Operation Party” with other children who were going to have surgery, where the nurses explained even more about the hospital, and you were able to “operate” on a little doll.
Alex’s open heart surgery was scheduled for the second week of August, and her grandmother flew in from Omaha, Nebraska, the day before she was to go in for the surgery, to help out with Dax. I was pregnant with Mikelle, and due the middle of September. We had just gone to Primary Children’s Hospital and had an angiogram done two days prior, so the surgeon would know exactly what he needed to do while in surgery.
August 10, 1989 - As I was tidying up the house and packing up things that would be needed for a hospital stay, Dr. Veasy called. He told me he had just viewed the pictures from the angiogram, and was quite surprised that the low lying VSD, or hole in the bottom portion of her heart, was quite a bit bigger than he had expected. It had unfortunately grown bigger as she had grown, and was now quite large. He went on to say that it would possibly be an eight hour surgery just to fix this hole alone. He explained, the heart would need to come out of the chest cavity and be surgically repaired, and then put back into the chest cavity, and basically be “turned back on”. He went on to say that it was like having major surgery on your femur, and then being woke up and told to go run a marathon. The leg would never get a chance to heal correctly, and this is what would happen to her heart. It would be “started back up” following surgery, and never get the “rest” it needed to heal correctly. Her heart would never heal correctly and therefore could possibly take years off of her life. He went on to explain that as he met to discus this surgery with other doctors at the hospital that morning, one of the doctors spoke of a doctor at Boston Children’s Hospital, a Dr. James Locke, who had recently begun a new and different method of closing these low-lying VSDs in the heart through a procedure done in the heart cath lab. He had learned this procedure in Europe and had performed it a few times and had success with it. He wanted to send Alex’s films and file to this doctor, have him look them over, and get back to us as to whether he thought he could help us. Dr. Locke was out of the country at the time, but it was our understanding that he would call Dr. Veasy when he had returned and looked over the file, and discuss with Dr. Veasy the possibility of this working for our daughter. Dr. Veasy said, “Mrs. Norton, if this doctor could help us, it would be an answer to our prayers”, and we knew many of those were being said in Alex’s behalf. So we were to just sit by and wait for Dr. Locke to return, read the file and look at the pictures, and call Dr. Veasy. Then we would need to be ready to get on a flight to Boston within a days notice, and make the trip. Because I was pregnant with our third child and my delivery date was September 25, I was unable to fly. That meant Alex would fly to Boston for this surgery with only her father. She was 5 years old. Her father has been known as her “Boston Buddy” since this experience.
Dr. Veasy heard from Dr. Locke on Wednesday, August 30, and Howard and Alex were on a flight the next day to Boston, arriving on Thursday, August 31. They took a little detour and toured the city of Boston for a bit and then headed to Boston Children’s Hospital to check in. Her surgery was scheduled for Friday morning, September 1, at the beginning of the Labor Day weekend.
Thursday, August 31, 1989 The first thing they did when they arrived at the hospital, was take her in for an ultrasound so Dr. Locke could see exactly what he needed to do in her heart. She was in the ultrasound lab for two hours and never moved or whined. Then they went to her room and ate dinner and got her ready for bed and surgery in the morning.
Friday, September 1, 1989 They came and got Alex early, about 7:00 am, and took her to the heart cath lab for Dr. Locke to insert a device into her heart that looked somewhat like a tiny double umbrella, and had tiny little legs to go on each side of the heart septum so the hole would no longer be there. After time scar tissue would encase the device so it would be immoveable. This would be the thirteenth time Dr. Locke had performed this procedure, and things didn’t quite go as expected. After a number of hours, Alex was brought back to her room with the bad news that they were unable to perform the procedure. The doctor had over shot the hole and had to bring the device back out, opened up, which caused a lot of bleeding in her chest and neck area. When she woke up she was quite sore. Dr. Locke stopped in to her room and said he was going to have to figure out what went wrong and try again on Tuesday, because of Labor Day. The next morning, Saturday, right after breakfast was brought in to Alex, Dr. Locke came in and asked if Alex had eaten anything yet. He said he had woken in the middle of the night after having a dream about how to do the procedure. He wanted to take her in for the procedure right then and do it while it was still fresh on his mind. Her dad sat down in the chair in her room and started to read his book. In about 45 minutes, they were wheeling Alex back into the room and he thought, oh no, something went wrong again. The orderly said they had done the procedure and Dr. Locke would be in in a second. Dr. Locke came in right away and told Howard that everything went great and that he would need to rewrite the procedures for this with this new method he had dreamed about. He said it worked so well that he was surprised how little time it took to do the procedure. A few days later, we were on a plane heading back to SLC with the device in place and working well, and a few lobsters in a box to celebrate! It did just what it was supposed to do and six months later, towards the end of March, she had her open heart surgery that repaired her arteries and heart and she is still doing great today, 29 years later.