Our Daughter, Jaelyn Marshall Fife was born on June 13th, 2022. She came into this world ready to put up a fight! Month's prior to her birth, the doctors found something irregular with Jaelyn's heart through a routine ultrasound. The sixth ultrasound they confirmed what she had. It was a heart defect called Dextro-Transpostion Of The Great Arteries or D-TGA.
D-TGA Info:
https://www.cdc.gov/ncbddd/heartdefects/d-tga.html#:~:text=Dextro%2DTransposition%20(pronounced%20DECKS%2D,position%2C%20or%20%E2%80%9Ctransposed.%E2%80%9D
I remember looking at my wife and just feeling empty as that doctor confirmed what our daughter had. It was like something we never felt before. Words cannot describe it. In that moment your brain just goes directly to the bad thoughts...you start questioning yourself what did you do wrong in life for this to happen...what could you have done better. You flat out question everything...did I not pray enough. What is it that we have to do to wake up from this nightmare. It was a very tough time in our life.
A few days later we were at a pediatric heart specialist office in Wexford, PA getting another opinion to confirm the prior doctor's finding. Dr. Prapti Kanani confirmed that it was D-TGA.
Dr. Kanani told us that there is this doctor that specializes in this heart defect. He is known all over the world for this particular surgery because he was one of the pioneers on how to fix D-TGA. She told us he is the best of the best. His name, Dr. Victor Morell.
A couple of weeks later we met with Dr. Victor Morell at Children's Hospital-Pittsburgh. I remember shaking his hand and this emotional weight my wife and I had been carrying up to that point being lifted off our chest. We were glued to every word he was saying. We had a list of questions that seemed to go on forever. After the meeting we were confident in him, his team and their plan for fixing our little girl's beautiful, unique little heart.
June 13th hit us quick and Jaelyn was here...my wife got to give her a fast little love squeeze on her little hand to let her know mommy was with her and then everything was a go. West Penn Hospital was so fast in getting Jaelyn the care she needed to get her transported to Children's Hospital to Dr. Morell and his Team.
It was fast, but to a Father signing papers for certain procedures to be done and watching nurses poke holes in my daughter's skin all the while placing her on a vent, while my wife was upstairs alone...time felt like it froze and I was just watching a slide show of pictures that ate up every piece of your heart.
Jaelyn's first big surgery when she arrived at Childern's Hospital was a balloon cath in her heart to open up a hole that all babies have when they are born. This hole that they wanted to leave open would help her blood mix together till she had her D-TGA surgery. This allowed oxygenated blood flow.
After that surgery we were able to hold her and read her some stories and tell her some stories about her big family and also tell her about her big sister that couldn't wait to give her a big kiss. We told her that she needs to keep on fighting so she can make her own stories. She just looked at us with her eyes. That's all we could see with all the wires and tape everywhere on her. Those eyes...those beautiful piercing eyes that just cut right through you. When she looked at my wife and I...it was something about her eyes that just grabbed you in a way and said don't worry Mom and Dad, we got this.
A week later she had her biggest fight yet. She was scheduled to be the first case. We gave her some big kisses & snuggles before the nurses & doctors took her back to surgery. It was an all day surgery. 8 hours to be exact. We were back to feeling empty and all those bad thoughts came rushing back into our head. It was the worst time of our lives.
After her surgery they sent her directly back to the cath lab. They found something they didn't like. It was a coronary artery that they detached and reattached back to her heart in a different location using a piece of her heart sack. Her numbers were everywhere and it was basically causing stress to her heart because the artery had some tension from the first surgery.
We broke down after they told us this...it just ripped us apart and shattered all these plans we were making. The worse was that Dr. Morell was in another surgery and part of his team was waiting on him to review our daughter's heart cath to see what the options were going to be. I looked at one of the team members while I was hugging my wife in this little meeting room and asked if they could do some kind of testing on my heart to see if they can use any of it to save my daughter's life. I told them they could take the whole thing. She can have every piece of it.
We went in and saw our precious little fighter Jaelyn in her CICU room after meeting with Dr. Morell. The Ecmo machine really makes it hard to breath when you first see it pumping blood through the tubes. They told us that machine is keeping her alive. It was a monster of a machine...we never saw anything like it.
It was few hours later when Dr. Morell brought us back to this little meeting room..I swear it was hard to breath in there let alone having a mask on during covid. He looked at us and said her anatomy of her heart was more complex then they anticipated. Her heart anatomy had to be essentially pulled and wired up more towards her chest. In doing so her artery could only stretch so much causing a problem with tension and thus causing stress and throwing her numbers off. Dr. Morell had a plan he was confident in. He wanted to take the artery that had lots of tension on it and create an extension. It would allow the artery to be more relaxed and allow better blood flow.
The next day our little one came out victorious. Her numbers improved almost immediately. The next few days was focused on removing her from the Ecmo machine and other attachments. They wanted to get her into a full recovery mode and get her upstairs to the 7th floor as soon as possible. The doctors and nurses were great through and through.
I saw Dr. Morell the last day in our daughter's CICU room. It was just us and Jaelyn. I told him I didn't know how to thank him for saving our daughter's life...he stopped me and said you don't need to thank me I know you both by now and you both are great parents and that's all that is needed. You just love up on her every moment of the day. I gave him a big bear hug like my Uncle George used to give me when I was a kid. He smiled at me and then he was off to a foreign country to do a series of life saving surgeries on little ones to give them a fighting chance like he did for our daughter.
After spending a month in the hospital and watching our little one go through these big life hurdles right at the starting line in life, It just plays a big factor on your life that you have lived thus far and changes you in a way that you can't explain, but you can show in your daily actions in how you conduct yourself day in and day out to your family, friends and the community.
It's crazy to think sometimes that our daughter, so small and innocent changed the trajectory of not only your life as her parent, but so many lives around you with her story and it's just the beginning!!! :)
Please help us in reaching our goal by donating what you can. The funds that are raised goes directly to the research and development of new/improved technology that can save so many lives of children diagnosed with congenital heart defects. They didn't have this technology decades ago. It would of been a different story then the one I just told.
Last year we hit our goal of $5,000 and it went over $10,000. So please, if you can come be apart of our team and help us raise money for the Children's Congenital Heart Foundation! We Greatly appreciate it!!
Jaelyn is already kicking her happy feet, ready to roll out to the Pittsburgh Zoo with her Big Sister Brayleigh!
Respectfully,
Amanda, Marshall, Brayleigh, Jaelyn & Jaelyn's Happy Feet Team