~Our Story~
It all began with a visit to the Doctor for a Level 2 Ultrasound. You see, we had gone to our Obstetrician for a routine ultrasound, but they could not see either our baby’s heart or his spine. We went to St. Peter’s University Hospital that day never expecting to hear the news we were about to receive. The Ultrasound technician called in a Doctor, and as they did the ultrasound, they looked very concerned and told us they would explain everything to us after finishing. Then came the news, our baby had a very severe congenital heart defect and would have to undergo multiple surgeries, one right after birth in order to survive. They stressed how it was one of the worst cases and suggested we visit a Genetic counselor and the Cardiologist at the hospital. They also said we should get an amniocentesis done to determine whether our baby would also have Down syndrome, because it is associated with some Heart conditions. We later found out, HLHS is not associated with Down syndrome. We went home devastated and in tears. To make matters worse, we received a call from our OBGYN telling us that they had just gotten the news from the hospital and were very sorry, but that since I was 20 weeks, I had one week to decide if I wanted to terminate the pregnancy. This was our biggest moment of despair.
Not knowing where to begin, but knowing I could never terminate the pregnancy, I started doing research on the Internet. You see, although we were told that our baby would had a severe congenital heart defect, we were never even given a name of the defect. Just that the left side of the heart never developed. Given that information, I looked up heart defects and found Hypoplastic Left Heart Syndrome. Basically, the left side of the heart is very poorly formed and cannot support the main circulation (round the body). Without oxygenated blood received from the lungs being able to be properly pumped to the rest of the body, the body cannot function. HLHS is a condition incompatible with life without major open-heart surgery.
That evening we went to Church, where we were prayed for. As the Elders at Church held us up in prayer, they asked for the Lord to give us strength and reminded us that he will only give us what he knew we could handle. Our Faith is what got us through that night. He gave us a sense of tranquility as he was going to guide us through this all.
The next morning, I called the Cardiologists office and after viewing the pictures of Jaden’s heart, he confirmed with me that it was HLHS. We made an appointment to see him the next day. I did some more research on the Internet and was looking into Children’s Hospital of Philadelphia, Boston Medical and Michigan. (Three top heart centers) Later that day, I received a call from the OBGYN again. This time they told me that there was another mom at their office whose baby was diagnosed with HLHS. She was about 8 weeks ahead in her pregnancy, but was going through the ordeal. That evening, she called me. Her name is Karin Tucci and she and her family have also been of great support to us. Her experience was quite similar to mine and she lived just minutes away in our town of Old Bridge, NJ. She had already gone to 3 Cardiologists and told us that the first gave her baby a 40% survival rate, the second gave her 70% and lastly, Children’s Hospital of Philadelphia gave her 85-90% survival rate. They also gave her encouragement and Hope. Hearing this, I knew I had to cancel my appointment at St. Peter’s University Hospital and go straight to CHOP. We set up an appointment to meet with Dr. Jack Rychik and Denise Donaghue. and to learn about their Fetal Heart Program. And so here our journey begins, the beginning of a chance at life for our unborn child.
We were excited and optimistic about going to CHOP. Here, we would be meeting with Denise Donaghue, Coordinator, Fetal Heart Program and Dr. Jack Rychik, Medical Director, Fetal Heart Program. All went well, although they confirmed the initial diagnosis and said our baby had HLHS, they were so reassuring and compassionate. During the consultation, they gave us all of our options. There was the 3 Stage Surgical Procedure, Heart Transplantation and compassionate care. We knew immediately that the 3 stage surgery would be our answer. The trust they had in their team and the success rates they had with the 3 stage repair had us convinced. Dr. Thomas Spray, world renown in Congenital heart surgery, would perform the 1st surgery, the Norwood. We knew we were at the right place and so, our plan was to continue my prenatal care here and deliver my baby across the street at University Hospital of Pennsylvania.
Oh, by the way, it was during this first visit we learned we were going to have a boy. He would be
JADEN ELIJAH BAEZ.
And so we continued our care at CHOP. Every day my little boy grew inside of me, he felt more and more real. His kicks and movements all very exciting, mostly because they were reassuring moments of knowing everything was still okay with him. We awaited his arrival, somewhat scared and patient. He was safe inside of me and I could protect him and we knew when he arrived, he would have to endure so much. Yet through all these emotions, we were calm knowing the Lord was by our side.
JADEN ARRIVES
I was 31 weeks into my pregnancy and was feeling sick. I chose to go see my doctor at St. Peter s University Hospital because the pain had not subsided and was becoming more intense. Once at the hospital, my doctor chose to keep me overnight to perform tests and ensure that I was not in pre term labor. Although the results came back negative, they opted to prescribe antibiotics, stating that an infection could be the cause. August 14th 2002, a week after seeing the doctor, the pain had intensified. I took some Tylenol and went to bed but awoke during the middle of the night on August 15th, with what I believed were contractions. As a first mom-to-be, unsure of what to expect, I immediately called my doctor and was told that my symptoms sounded like an intestinal virus and was instructed to drink as much water as I could and if the pain did not subside to rush to the emergency room. The pain only worsened, so as instructed, my husband and I drove to St. Peters. When we arrived, I was told that I was already 6 cm dilated and to expect our little one very soon.
At 9:27 am, just a couple of hours after we arrived, Jaden Elijah was born, 3lbs 9 oz., two months premature. Our only moment with our son, was a quick kiss before he was taken to the NICU, where he was given Prostaglandin, a medication given to keep the Patent Ductus Arteriosus, a tiny vessel between the aorta and pulmonary artery, open. Without this medication, this vessel would close and he would die.
One hour later he was transported via helicopter to CHOP. Although I had to remain in the hospital, my husband drove to Philadelphia to be with our son.
HAPPY BIRTHDAY, our little one!!!!!