Ayden’s Story
Our son Ayden Ray Johnson was born in February with a congenital heart-defect and this is his – and our – story………….
My name is Stacy Johnson. I am married to a wonderful man named Travis Johnson. We have a beautiful healthy 10-year old daughter named Makayla. My husband and I have always talked about have two or more children but wanted to wait till we felt financially comfortable to do so. Five years after the birth of our daughter, we decided it was time to try for our second child. Travis was ecstatic to find out that we were going to have a boy!
Pregnancy and delivery……
Our pregnancy was great - no morning sickness and I just felt really healthy through the whole pregnancy. The sonograms were normal - no problems detected. Ayden was born on February 22, 2007 – just the picture of health - no signs of trouble. The only thing unusual was his umbilical cord was only 7 inches long – with normal being 22 inches and more. He weighed 6.06 oz. After he was checked over in the room everyone got to hold him. All of his aunts, uncles and grandparents were there and the happiest of all to hold him was his big sister! After a few hours it was time to take him upstairs to the nursery to get checked out.
The heartbreaking news and diagnosis…….
Only a few hours after being in the nursery of Charlton Methodist Hospital, the head nurse and doctor on-call came in to tell us what they think is wrong with Ayden and that Care flight is on their way to pick Ayden up and take him to Children’s Medical City in Dallas to be placed in NICU and to see the heart specialist.
Medical City Hospital Children’s Hospital Heart Center- the Doctors and Truncus Arteriosus……..
Once we got there the Cardiologist, Dr. Kao came to our room where she explained what Truncus Arteriosus was and who was going to fix it. Truncus Arteriosus is a Congenital Heart defect that happens to babies in the womb between the 6th to 8th week of pregnancy. Doctors have no idea why this happens but 1% of babies born in America are born with Congenital Heart Disorders. Truncus Arteriosus has levels of seriousness. We were blessed to have the least of the 4. Every doctor and nurse that we talked to made it a point to tell me that this was nothing that I did during my pregnancy. But the guilt had already set in. Thinking back on my pregnancy, did I eat something wrong, was I running during those weeks of development. Every time I heard someone say “this was not your fault” I would felt like jumping off a bridge.
DiGeorge test…….and our second miracle…………
Also with Truncus Arteriosus, very often the baby also has a disease called DiGeorge Syndrome. This effects 98% of Truncus Arteriosus babies and causes immune problems, mental retardation and a list of a hundred other things as well. (The hospital did a blood test for this, and we had to wait over nine days for the results. So we had to keep him in a sterile environment until we knew. Until Ayden, our cardiologist had never treated a baby that did not have DiGeorge with Truncus. We had another miracle when we later found out he did not have it – our prayers were answered.)
Our surgeon and what Truncus is……….
Next she introduced us to the surgeon, Dr. Eric Mendeloffe. He specializes in Pediatric Congenital Heart Surgeries. Dr. M sat down with the whole family and drew us pictures of the normal heart, Ayden’s heart, and what they would do to repair his heart, explaining how the procedure was going to be done. He had total confidence that he could fix Ayden. Truncus Arteriosus means that the pulmonary and Aortic Vault is not split apart (is one artery instead of two and only one valve). They are supposed to split apart between the 6th to 8th weeks but Ayden’s did not. This causes his Oxygenated blood and Non-Oxygenated blood to mix and go through out the body and into the lungs.
NORMAL HEART
Ayden's Heart (Truncus)
During surgery, Dr. M would insert a tube (called a conduit) to form the Pulmonary artery and valve (which unfortunately is tissue from a donor baby). He would patch his large hole (Murmur). The surgery would take a minimum of 6 hours and Ayden would need to be on a heart bypass machine because his heart would have to be completely stopped so Dr. M could work on him. He also warned us that they would need to leave Ayden’s chest open for 5 days after his surgery because of the swelling. The surgeon said it would be best to wait until Ayden was a month old to do the surgery, allowing him to gain as much weight as possible. So the surgery date was set for March 26th.
At this point it was just 28 hours after the birth of our son. We had experienced the joy of his birth, the devastation of his condition, and fear of loosing him. Now, we had hope, we could smile through our tears knowing that this was “fixable”! We had a long road ahead, but had our family, friends – an unbelievable support group and their prayers.
Surgery and recovery………………..
When March 26th came, we took Ayden in and handed him over to the Anesthesiologist. Every hour Dr. M’s right-hand person, Cathy, would come out and give us an update on how he was doing. The expected 6 hours went by and Dr. M wasn’t done. Towards the end of the surgery, Dr. M. did another Echogram (echo) on his chest to just make sure the hole was completely closed up and all the blood was flowing in the right direction. In order to do this he had to warm up Ayden’s little body and take him off the bypass machine to do the echo. He discovered the stitching closing the hole (murmur) in his heart was creating more tiny little holes. So he needed to go back into his chest and repairs those areas. So Ayden’s body had to be cooled down again and put back on the bypass machine……….9 hours had passed since our son’s heart was stopped.
We finally got to see him as they were taking him into the express elevator straight to his room. Dr. M warned us that he would be an extremely sick boy for several days because of the difficult surgery. Sick was not the right word, struggling for days because of the severe surgery, would have been better. That night his kidneys started to fail. That meant if something wasn’t done the rest of his organs would go next. Dr. M quickly performed a surgery on him to put a mini bypass machine called Echmo Machine. This allows his heart to still beat but with a lot of help. Now that the body wasn’t consumed with worrying about the heart the rest of the organs could catch up and get stronger - then the heart would be able to get stronger.
The surgery was successful. But the next day his heart was starting to take on too much fluid around it. So Dr. M went back in to absorb the fluid and found that those holes were seeping again. This surgery I couldn't wait for, I had had enough. I locked myself in the bathroom of the waiting area and just broke down. Crying and making bargains and promises, not breathing and throwing up. I was having a genuine mental breakdown. This was the third surgery I was going through where Travis and I had to sign a document saying that we understood the number one risk was death and I just couldn't cope. Every so often I would peek out of the bathroom door just to see if Dr. Mendeloff had come out to tell us how the surgery went. It was only after I saw Dr. Mendeloff leave, and Travis have a smile on his face, that I could breathe, wash my face, straighten up and then walk out. The surgery was a success. This time Dr. M. put a glue-like substance all over the patch that would harden and prevent anymore leaking. After that was done Ayden started to progress. After three days they took the Echmo Machine out from his heart successfully and after five days Dr. M closed his chest. Five surgeries he went through and each surgery broke off a piece of my heart as his was being put back together. We stayed in the hospital’s PICU for over a month – waiting for the day Ayden would be transferred to the next floor, which meant he would soon be going home. But there were always more tests, x-rays, little steps and plateaus he needed to reach before this could happen. Thirty-seven days later, that day finally came and we were overjoyed that we had Ayden back home with his sister – we were a whole family again. 
