Maeve’s Medical Needs

Our daughter Maeve started her journey into this world with unforeseeable challenges. At my 20 week anatomy scan we were told our baby girl had excessive cerebrospinal fluid and a possible heart condition and were advised to consider the option of termination. My husband and I were overcome with devastation, but made an appointment with Maternal Fetal Medicine and began the process of figuring out what exactly was going on. Through additional ultrasounds, fetal MRI, echocardiogram, genetic screenings with both our blood, and genetic testing by amniocentesis we were told genetic factors were unlikely and our baby was diagnosed with severe Ventriculomegaly and Tetrology of Fallot with Pulmonary Atresia.

As weeks went on the Ventriculomegaly regressed and stabilized, and we thought we had a good idea of what was going on and where we were heading. However, we were sadly mistaken.

At 31 weeks I went into preterm labor. Seconds after delivering our newborn baby girl the doctors raised several concerns. The medical staff spoke softly that she appears to have low-lying ears and that they're unable to pass oxygen tubing through her nose. Minutes turned into hours and doctors began mentioning a possible genetic component is to blame. After several tests and more genetic screenings it was confirmed that Maeve has an extremely complex medical condition known as CHARGE Syndrome. This syndrome affects a variety of components of the human body. For Maeve this was colobomas (missing tissue of the eyes), heart defect, bilateral choanal atresia (lack of connection between the back of the nose and throat), and ear/hearing anomalies. Maeve has what's called a "de novo" mutation, meaning it isn't something she inherited from my husband or myself. This condition has already required Maeve to spend 5 months of her life in the hospital and undergo 7 surgeries.

One of those first surgeries being that for her heart defect. At just 3 weeks old (34 weeks gestation) 3.6 lbs Maeve went in for heart surgery and came out with an arrhythmia that threw her into cardiac arrest then placing her on life support known as ECMO. After 5 days on ECMO Maeve was able to come off and thrive on her own. Throughout the 5 months of her life she's had a moderate stroke, a tracheostomy to provide her with an airway, gastrostomy to give her a way to eat, and another heart procedure to allow her to get oxygen to her lungs.

Our strong warrior Queen Maeve has gone through more than we could've ever imagined in just the 5 short months of her life on this earth. Her need to follow-up with multiple medical disciplines will continue so long as she fights for life.

We want nothing more than to give our daughter a quality of life worth living. But with so many hospital visits and doctors appointments on the horizon it has forced us to miss work and go without pay for days at a time. Unfortunately the expenses show no signs of stopping. So as difficult as it is, we are asking for financial help.

If you're unable to donate please just send any thoughts, love, or prayers that you have. For our sweet baby Maeve is still very sick and in need of a full heart repair.