
Maple Jane: Born with Half a Heart
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Read the details of Maple's story below.


Hi! Adam and Kelly here. We welcomed our first daughter into the world on 3/2/24. Her name is Maple Jane Tuminaro, and she's absolutely stunning.
Maple was diagnosed with TGA (Transposition of the Great Arteries) at Kelly's 20 week anatomy scan. The 2 primary arteries of Maple's heart are backwards. Because of early diagnosis, we had several months to prepare for a newborn with this specific congenital heart defect, and the surgery that she would need after birth.
In Kelly's 8th month of pregnancy, we scheduled Maple's Arterial Switch Operation at Nemour's Children's Health in Lake Nona, Florida; a 6 hour open heart surgery that would repair her heart for the rest of her life.
But nothing prepared us for the complete change in her diagnosis after her birth.
The Nemour's Cardiology Team determined that Maple's right ventricle was too small to function; a detail that was impossible to detect while she was still in the womb. Moving forward, she will be treated as a "single ventricle baby", also known as a baby with half of a heart.
Her official diagnosis includes 4 heart defects:
- Hypo-Plastic Right Heart Syndrome (The right side of the heart is too small to function)
- Transposition of the Great Arteries (The 2 primary arteries of the heart are reversed or "transposed")
- Pulmonary Stenosis (A small, narrow, or "stiff" heart valve.)
- Ventricular Septal Defect (AKA "a hole in the heart")
While her original diagnosis of TGA is still technically accurate, it has ironically become an irrelevant detail in her journey to heart health. Instead of the originally planned Arterial Switch operation, she will now undergo a series of 3 open heart surgeries, known as the Norwood, Glenn, and Fontan.
At this point in time, Maple has undergone 2 successful procedures:
- A Septostomy (non-surgical procedure) was performed to open her ASD. This temporarily allows for greater oxygen mixture in her heart.
- A variation of the Norwood surgery, which placed 2 bands around her arteries to control blood flow to her lungs. This was her first open heart surgery, performed on 3/14/24, and it was successful.
She is currently recovering from her banding surgery, and we are fortunate that there have been no complications.
Long term, Maple will live a majority of her life with reduced oxygen levels. (Think of this as though she'll live on a high mountain, at elevation, as opposed to being born at sea level.) She currently has between 75% and 85% Blood Oxygen Saturation, whereas healthy children have 97%-100%. Her heart condition does not necessarily cause her pain (excluding heart surgeries) but she does get very tired, very quickly. This will improve with time, as she adjusts to her lower-than-normal oxygen levels.
Children who never experience full oxygenation have an incredible ability to adapt, though it's not fully understood what takes place in their bodies. While her dual diagnosis of HRHS and TGA is extremely rare, there are many children with similarly severe heart conditions who live full and healthy lives.
Aside from a lower cardiovascular capacity, Maple will still be able to play (low-impact) sports, have a career, a family, and pursue any intellectual endeavors she chooses. If you saw an adult who had undergone the same procedures that Maple is facing, you would not know there was anything wrong. (But you'd probably beat them in a foot race! Lol.)
We are hopeful that Maple will be able to come home for the first time in April, where she'll stay with us for 6 months before returning for her 2nd surgery. She will be monitored closely with a Pulse Oximeter (a small cuff on her foot) and return to Nemour's multiple times per week for check ups and heart scans.
We expect her 3rd open heart surgery to be performed between the ages of 3 and 4. This final surgery, known as the Fontan Operation, is the most dangerous of her 3 surgeries. However, it can potentially bring her oxygen levels to 90%.
At this point in time, we are both virtually unable to work. Adam is a full time content creator, and Kelly works in design, at local home builder. While Kelly can return to work when she’s able to do so, she is not paid during her time off. Per the nature of Adam's work, his income is dramatically reduced when he does not make YouTube content, and cannot take on any projects within the music industry. With Maple's new diagnosis, we are unsure when either of us will be able to return to work full time.
Some of our main expenses include:
- Mortgage
- Health Insurance (Kelly and Maple)
- Utilities (Electric, Internet, Water, Trash, etc.)
- Food
- Travel (Gas, Tolls, Dog Walkers, etc.)
We are seeking assistance to help us buy time until we can both return to a normal work schedule, after Maple is discharged from Nemours.
We're incredibly grateful for any help that you can offer.
If you'd instead prefer to support out small businesses, they are both linked below.
Thank you!
-Adam and Kelly
Organizer

Adam Tuminaro
Organizer
Orlando, FL