Maia's Heart Surgeries - DILV

Hello!

My husband and I, Harold and Nancy, learned at 22 weeks into my pregnancy that our little one had developed a heart defect. Maia's heart defect is called a Double Inlet Left Ventricle, it is a very rare congenital heart defect in which she only developed one ventricle — the pumping chamber of the heart. After three surgeries she is expected to have a relatively normal childhood and adulthood.

Maia is due on March 19, 2024, therefore the information we have is from what cardiologist can see with echocardiograms. We still have to see how her heart will function after she is here but, we do know that she will need at least three heart surgeries after she is born. She may need more or even different procedures, and the timing of the surgeries will range from a few days old to 6 years old.

While we have medical coverage, this fundraiser is set up to help us pay the out of pocket expenses that we will accrue from the surgeries and the long stays she will need at the hospital after each surgery. Her over night stays will range from one week to three weeks post surgery.

For those of you who want to know more about this heart condition and how the surgeries will help in the long run this is for you...

The left picture is very close to how Maia's heart developed and the right picture is a typical heart. Due to the structure of the heart, Maia's heart will put a lot of pressure on her lungs when she is first born. Her first surgery will most likely be placing a pulmonary artery band to create some resistance on that pressure. That surgery will happen between a few days old and 3 months old. The next surgery, Hemi-Fontan/Glenn procedure, will happen a couple months later. This is an open heart surgery that will start the process of correcting the mix of her deoxygenated blood and oxygenated blood. Some of her deoxygenated blood will bypass her heart and go straight to her lungs. The last surgery typically happens in the toddler age called the Fontan procedure. During this open heart surgery the remaining deoxygenated blood that is going to her heart will be bypassed to her lungs and therefore now sending all deoxygenated blood from her body straight to her lungs. Now her heart will be only pumping oxygenated blood to her body.

We are extremely lucky to live in an area close to one of the best pediatric cardiothoracic surgeons in the Northeast and he has a great team that will continue to meet and follow up with Maia throughout her childhood.

Updates will be provided as we learn how her heart starts to function on its own.