Amazing Little Hearts
This support group delivers just what its name implies: amazing support. The members are parents who have been just where you are today, and have returned to offer their stories, friendship, and comfort from a place of total understanding. Learn more about Amazing Little Hearts.
Our Heart Stories
In the spirit of enhancing awareness of congenital heart disease, here are our heart baby stories. If you'd like to include yours, please contact us at (972) 566-2525 and we would be more than happy to accommodate.
Tucker Levi Hamilton was born at 8:35am on Sept. 9, 2009. We had 24 amazing hours of normalcy, when our angel, the lactation consultant, noticed he was breathing too fast. The doctors in McKinney decided we needed to go to Plano, and within an hour of arriving in Plano, we were on our way to Medical City Children's Hospital.
That Thursday was undoubtedly the scariest and most overwhelming day of our lives. We were told that he would've died if any piece of that day's events had taken any longer, so we know that God's hand was present in the sequence of that day's events.
Officially, Tucker has Hypoplastic Left Heart Syndrome (HLHS). HLHS babies have a very small aorta and little to no left heart ventricle when they are born. The solution to HLHS is to have a series of operations over the course of the first few years of life. He had the first procedure when he was 12 days old. During this Norwood procedure, they expanded his aorta and began the process of re-routing the blood flow through his heart and to his body. The 2nd procedure was performed on Mar. 16, 2010, and is called the Bidirectional Glenn Procedure. During this procedure, they disconnected the superior vena cava from the right atrium of the heart and connected it directly into the pulmonary arteries. The 3rd surgery will be at about 3 years of age and is called the Fontan Procedure. All of the surgeries are fully invasive, fully open-heart procedures that require heart/lung bypass and multiple hours.
When all of the procedures are complete, his heart will really only be two chambers. The right atrium will not really function to pump blood; the left atrium will receive blood from the lungs and transfer it to the right ventricle. The right ventricle will function to pump the oxygenated blood to the body. All returning blood from the body will not enter the heart at all, but will be pushed around by the blood pressure and eventually make its way directly to the lungs.
This is a very rare, very serious condition. Only 4 out of every 10,000 live births have HLHS. Each surgery carries great risk as well. The survival rates that correspond to the surgeries are 80% survival rate after the 1st surgery, 100% after the 2nd surgery, and 95% after the third surgery. It's very comforting to know that we apparently have the best surgeon around. Dr. Eric Mendeloff and the staff at Medical City Children's Hospital have been great to us, and we are also blessed to have the most incredible cardiologist, Dr. Tim Thomas.
Dr. Mendeloff and Dr. Thomas said that kids with this defect, that have all the surgeries and do well, can live an absolutely normal life. The problem is that they have only been performing this set of procedures since 1981, so the oldest surviving kids are in their late 20s. There is no indication that there will be any long-term complications, but they just aren't sure yet.
Tucker is now living out a normal childhood and is doing as great as a child with HLHS can do at this point in his treatment! He is growing and developing well and normally for his age. Except for the scar on his chest, you probably wouldn't know anything had ever happened to him.
We are very blessed to be where we are with Tucker! God has poured out his grace on us during rough times and been our rock. This experience has strengthened our relationship with each other and with God. We have also experienced tremendous love and support from our friends and family! How great is our God!
Ethan (TGA, VSD)
Ethan Kyle Durham was born on Dec. 3, 2008 at 5:21pm, weighing in at 7 lbs 10 oz and stretching out to 20 inches long. After worrying for the past 39 weeks, we finally had our son and he was PERFECT!! The ride to that point was a bit bumpy and my induction ended up being a C-section but, even that was just a part of God's amazing plan. Unfortunately, I got sick and our hospital stay was extended. That proved to be a big blessing as did the spur-of-the moment pediatrician decision as I was undergoing my 2nd epidural. Dillon and I couldn't remember the name of the one we had previously selected! A nurse in the room and my OB both suggested someone and we went with that.
The day Ethan and I were to be released, our (yes, he is now OURS) pediatrician thought he heard a murmur in Ethan's heart. Well, that prompted an echocardiogram and then eventual diagnosis of a condition called TGA or Transposition of the Great Arteries. TGA is a defect in which the aorta and pulmonary artery are on the wrong sides of the heart and need to be switched back. This is a lifethreatening condition, and if we had taken Ethan home, who knows what might have happened?
While it was rough to realize our baby boy would need open heart surgery, it is amazing to see how God saw us through to that point. Most defects of this nature are detected prior to the birth of the child but, since none of my doctors were looking for a defect (after all, he was born with all 4 chambers of his heart), it sort of slipped under the radar. Most babies show signs at birth (like turning blue) but Ethan looked perfect because he had two OTHER defects: a hole in his heart (VSD) and his Ductus Arteriosus (allows blood to mix while in the womb) remained open (PDA). This ended up being another blessing because they acted as a bypass and kept his blood mixing (as a normal heart would do) which kept him in good shape until he could be operated on. Is God good or what?
Ethan had his surgery on Dec. 12, 2008. Dr. Eric Mendeloff performed it and everything went off without a hitch. It is totally amazing how surgeons like him can operate on such delicate organs! There were parts of the surgery that were very critical, but prayers held us all up. Ethan came through it like a champ! They had to leave his chest open for precautionary reasons (swelling), but he was able to have that closed up on the Dec. 15, 2008. After a 4 week stay in the hospital, we were finally able to take our baby boy home!
Ethan is now living a healthy and normal life. His only setback was some scar tissue buildup in the pulmonary artery and valve, but this was surgically addressed on April 15, 2009 by Dr. Mendeloff. We are hoping future run-ins with Dr. M and his staff will be limited to Amazing Little Hearts Events! ;-)