Chloe Mai’s Story
Chloe Mai was born with a congenital heart defect in October of 2012. At 20 weeks gestation she was diagnosed with a Complete Atrioventricular Heart Defect. This meant her heart failed to divide vertically to form a left and a right chamber of the heart. For Chloe this also meant that she had one valve leaflet responsible for two valves instead of them having two separate leaflets. As we sat and listened to the fetal cardiologist explain how our daughter will need to undergo heart surgery at four to six months old. We vaguely remember hearing how confident he was that she would be alright. We left the office with uncertainty.
Chloe was born stable. However, it became evident quickly that she would need surgical intervention sooner than anticipated.
At 3 weeks old Chloe went for her first open heart surgery. She had trouble coming off the heart and lungs machine. Her body was so swollen they decided to keep her open chested for 3 days. 6 days after surgery they tried to extubate her. Immediately after extubation you could tell something was wrong. Part of her left diaphragm was paralyzed and she was not tolerating surgical repair. An emergency echo discovered that the tissue holding the repair had torn and she was again in gravel peril. The next morning she would have to brave her second open heart surgery.
At 4 weeks old she went for her 2nd open heart surgery. Everything was progressing well until she started with chylous effusion. She was leaking fats into her chest tubes. There she sat intubated for the next 4 weeks. As we all waited for the chylous effusions to subside. Chloe was then extubated and once again we realized something was not right. Like the sutures from the first repair; the two patch mesh repair had now failed. Once again Chloe needed another surgical intervention but the problem was how and what? They currently do not make a small enough sized prosthetic mitral valve for an infant her size. At this point we were approached by the team of doctors informing us Chloe most likely will need a trachea. That she will need to grow on the vent long enough to be fitted with the smallest valve. Given he already weakened state we were warned of the seriousness of the situation. By chance I was speaking with another Heartmom and she had mentioned the experimental valve that Boston Children's Hospital created. It was called a Melody Valve. We talked with her cardiologist and cardiac surgeon about the valve and agreed that she will be placed with the experimental valve.
At 10 weeks old Chloe underwent her 3rd open heart surgery. She was placed with the Melody Valve and became Baby number 11 to receive the valve. By early the next morning she was extubated. She was really finally doing well. Until Miss Chloe through yet another curve ball at us. She started to have heart rhythm issues. They monitored her closely for the next 3 days.
11 weeks old Chloe went down to surgery to get a pacemaker implanted. She was moved from Cardiac ICU to the main floor where she had to deal with withdrawal from the medications she was on from the whole time she was in CICU.
13 weeks old discharged from Boston Children's Hospital to UMass on a closer to home program. 14 weeks old she finally came home.
The last few years has been just as trying. Since the placement of this valve Chloe has had 4 Heart catheterization. 2 of which ended with an expansion of her experimental valve.
This valve has served her well and done it's job to get her older, stronger and more importantly bigger in preparation for a more suitable permanent mitral valve.
Now Chloe is 5 years old and is transitioning from a preschooler to a young lady. As for most children her age it is full of changes and challenges. For Chloe this also means the time has come for her 4th Open Heart Surgery to upgrade her pacemaker and replace her valve. This coming so soon after the holidays was very unexpected for us. Yet another curveball by Miss Chloe. Being able to give Chloe the love and support she needs and deserves right now is the most crucial element to her recovery. We cannot do this without your help and prayers. We greatly appreciate everyone, and we can never repay your kindness.
Thank you for taking the time to read this,
The Marinelli Family
- Garry Muratore
- Karen Hopkins
- Matt Wright
- Kate Dondero