Meet Miss Molly Moo

I'm writing to you with our story on our daughter, Molly Renee Leary. She is a four year old little girl that has had a very rough start to her life. When I was 20 weeks pregnant we found out we were having a girl and we were on top of the world. We had tried so hard to get pregnant and nothing was going to bring us down until we received a call from the OB 8 days later telling us they were sending me for a level 2 ultrasound because they think they saw something wrong with the baby's heart. Within a week we had an appointment at New England Medical Center. They performed the ultrasound and there was definitely something wrong with the heart, but they couldn't tell exactly what it was. She definitely had at least one hole in the heart and an amnio was suggested because there was a strong chance the baby would have Downs Syndrome. We received the results of the amnio 2 days before Christmas and everything was normal. The rest of my pregnancy was full of fetal echos, ultrasounds, non stress tests, etc. Early on the pediatric cardiologist suggested the baby may have Heterotaxy Syndrome because she thought she saw an interrupted IVC and suggested we seek a second opinion at Mass General. So we did and she also suggested Heterotaxy Syndrome, but it was ruled out. At 7 months the cardiologist had suggested it again. It looked like the heart was on the right side of the body and the other organs were reversed. During our next ultrasound we had suggested it to the tech and sure enough; the heart and stomach were on the right, the liver was midline and she was diagnosed with Heterotaxy Syndrome. We were told that her intestines may also be malrotated but we wouldn't know that until she is born. The baby, that we had decided to name, Molly Renee, was measuring pretty big towards the end. I was begging for a c-section because I didn't want her in any distress since they were anticipating her to be pretty sick. They said if she measures 11 lbs they will do a c-section. At 38 weeks pregnant she was measuring 11 lbs 4 oz so we were scheduled for a c-section on May 4th. We were told that she will go home and grow for 3-4 months before her first open heart surgery.

On May 4, 2010 Molly was born at 10:35 am, 10 lbs, 5 oz at NEMC. Her right lung was collapsed and she was taken away pretty quickly and sent to the NICU to be stabilized. My husband went with her to the NICU and came back shortly after to tell me she was being transferred to Children's Hospital Boston as soon as a bed became available. She was transferred the following day where she spent the next 8 months. They performed an echo and diagnosed her with an ASD, VSD, Common AV canal, Interrupted IVC, Dextrocardia, Heterotaxy Syndrome with polysplenia and malrotated intestines. She had a cardiac cath and did not do well at all. She ended up with a PA banding and a PDA ligation at 8 days old and this did nothing for her. We tried extubation and failed. She didn't even last 24 hours. It would take nothing for her to drop her sats to the 20s when she was mad. We tried to buy time but she kept showing us that she needed her repair. At six weeks old she had a bi vent repair performed by the most incredible surgeon I have ever met, Dr. Emani. She was still having trouble breathing, trouble with her pressures and sats. We received a call one night telling us that we should come in because her heart rate was 235 and they had to shock twice to get her back. They performed a 3D echo and discovered her mitral valve was leaking at a pretty good rate and would need to be repaired. She went back on bypass for the 2nd time in 2 weeks and while they were in there they placed a permanent pacemaker. During her recovery she was getting really high fevers of 103+ so they cultured her and she tested positive for a blood infection. While battling the blood infection she also had chylous effusions. Her chest tubes were dumping about 500 ccs of fluid a day. This went on for 6 weeks. She was finally switched over to a low fat formula and the drainage slowly stopped. Because she was so sick for so long and on a ventilator for 5 months she became dependent on the ventilator and ended up with a trach and g tube. She was finally discharged on January 4, 2011. We came home on a ventilator at night and oxygen 24 hours a day. She came off of the ventilator and O2 in March and her trach was removed in August 2011.

After countless procedures, caths, bronchs, etc Molly is home and doing so well. She was hospitalized one Thanksgiving for a stomach bug, but other than a few over night stays for bronchs and a trach site closure we have managed to stay hospital free. We continue to be followed by several departments at Boston Children's Hospital. Molly's intestines are malrotated and we monitor her very closely for any complications. Because she was in the hospital for so long she is behind developmentally and she has multiple therapies each week in and outside of her pre-school class to help her. She has come so far - Molly eats well, walks, talks, writes, and is starting to read!! She loves her iPad, which she navigates like a pro! Her outstanding cardiac issue is a very small VSD and some mild regurgitation on her mitral valve.

The hope is that we get her childhood years out of her mitral valve before it needs to be repaired or replaced. But for now we have put that out of our minds and are focusing on all of the joy she brings to our lives. We are so proud of Molly and every heart warrior and angel!