I have started this fundraiser to help Tom & Kim with their daughter's upcoming heart surgery expenses. Tom will be away from work for up to 2 months. The funds will be used to cover living expenses while in Houston for her surgery and recovery, and as Emma's recovery continues back home.

“So now, take your stand and see this great thing which the Lord will do before your eyes.”

(1 Samuel 12:16)

 

Tom talks about Emma's Journey:

 

At six months old, our daughter Emma’s pediatrician heard a heart murmur and recommended she see a pediatric cardiologist.

 

During that first visit here in Jacksonville, the ECG technician left the room to find the cardiologist. We could sense something was not right, and after waiting for what felt like an eternity, we finally met with the doctor. She informed us there were multiple anomalies.

 

The pediatric cardiologist diagnosed Emma with "Superior sinus venous atrial septic defect," a rare version of an Atrial Septic Defect and an "anomalous left anterior descending coronary artery from the right coronary artery." These anomalies, we were told, would not heal on their own over time and would require open-heart surgery. My wife and I were in absolute shock, and our hearts sank as we realized what the future would now hold for our baby girl.

 

SVASD is a rare disease that permits blood shunting from the systemic to the pulmonary circulation. In her latest round of imaging, around one year ago, we saw the dramatic effects of this defect on Emma’s heart. A significant Atrial Septic Defect was causing extra blood to overfill the lungs and overwork the right side of the heart. If not treated, the right side of the heart eventually grows larger and becomes weak. The blood pressure in the arteries in the lungs can also increase, leading to pulmonary hypertension. In Emma’s case, the right half of her heart was already double the size of the left half of the heart.

 

Complications if this is left untreated are:

-Right-sided heart failure

-Irregular heartbeats (arrhythmias)

-Stroke

-Early Death

-High Blood pressure in the lung arteries (Pulmonary Hypertension)

 

With open heart surgery needing to be done to correct this issue, we began a long journey to find a pediatric heart surgeon with experience in this rarer form of ASD. Our focus has been on finding the best surgeon, medical team and faculty we could to handle Emma’s case. We believe we found that in the Texas Children’s Hospital in Houston team. We pray and ask God to keep Emma strong through this journey and guide us in the decisions we have had to make. Her surgery is now scheduled for April 27, assuming she has no viral infections between now and then. If she does get sick, the surgery will have to be rescheduled.

 

We have lived with this reality for the past 3 1/2 years, knowing that she would have to undergo this major surgery. For Kim and me, this has been the most stressful event either of us has had to deal with. As parents, we have focused on controlling what we can. We know this will be very hard on our energetic little girl, who is our sunshine. After open-heart surgery, the road to recovery will be a long trial for our whole family. We are told it will be three months until she is healed internally and can be picked up and held in our arms again without worry of internal damage.

 

We are truly thankful for the community of support that we have. We truly appreciate any support you are able to provide to help us through this challenging time and ask that you please keep our daughter in your prayers.