Camdyn's Story: Parent's Letter Project Tetralogy of fallot- Camdyn's parents

In June of 2008, after eight months of marriage, my husband and I found out we were expecting. We had our first ultrasound October 17th, 2008. I remember going to the appointment and being so excited to meet our baby for the first time. My husband, Bryan, and I were pretty certain we were having a girl and we could not wait to find out for sure.

The beginning of the ultrasound was amazing. We saw our baby up on the monitor, legs crossed, and sweet as could be. The ultrasound tech kept referring to our little “girl” as “buddy” and it didn't take us long to realize our little girl was actually a sweet baby boy! The technician was very good about explaining everything she did and really took her time with us. We were thrilled to see our baby had ten fingers and ten toes, two arms and two legs, and a magical beating heart.

I remember the technician spending a long time looking at his heart. Initially I figured it was just because the heart was intricate and needed a little more attention but, it wasn't long before I knew that was just wishful thinking. The doctor came into the room, spent a long time looking and with a big sigh explained to us that he thought our baby had something called an Aortic Truncus. He referred us to Children's National for a fetal echocardiogram.

The drive home was horrible. We had so many questions and no answers. We went from having this feeling of elation to a feeling of dread and mourning. Once we got home we started to “google” Aortic Truncus and were terrified by what we read. When my phone rang and I saw a DC number I didn't answer it, I couldn't. After a few minutes I mustered up the courage to check my voicemail and then had my husband call and make the echo appointment.

The days before our Children's National appointment were depressing and difficult to say the least. My husband and I spent our first year anniversary in the perinatologist's office discussing amnios and genetic testing. By the time we got to Children's we were just ready to confirm our diagnosis. We hoped for the best, but prepared for the worst.

That was the day we met Mary Donofrio, MD. She came into the exam room, where I was having my echo and introduced herself. She spent some time with the echo tech imaging the baby's heart and afterwards asked us to meet with her in the conference room. She had such a positive attitude, she put me at ease. I figured if she wasn't excited, I shouldn't be, and that attitude has stuck with me to this day.

In the conference room she explained to us that our son had something called Tetralogy of Fallot. She drew us pictures of the heart and its defects, explained that he would need surgery and answered all of our questions thoroughly. Reality. I felt scared and relieved at the same time. I was happy to have a diagnosis, but sad that our unborn child would have to undergo open heart surgery. I just thought it wasn't fair for such an innocent baby to have to undergo something so invasive.

Our beautiful son, Camdyn, was born March 2, 2010. He was absolutely perfect! We had three wonderful months at home with Camdyn prior to his surgery. I enjoyed every second with him and tried not to dwell on his upcoming surgery too much. When I thought about it, it was really difficult. I literally didn't think I could survive his surgery. I know that sounds crazy but there is really no better way to explain it. I just didn't think that I could handle going through something that difficult.

The day before surgery we went in for his pre-op day. Camdyn's oxygen saturation had dropped from the low 90s to 64 percent. They decided us to keep us overnight. The staff on the Heart and Kidney Unit (HKU) were so attentive and kind. They made us feel completely comfortable and safe. Thanks to them, we were actually able to get some sleep that night.

The morning of June 5, 2009, we walked Camdyn down to the operating room. We were met by the team in the hallway. I remember there being several warm faces all waiting there for our baby. The time had come for us to hand him over. All these people were responsible for the well-being and outcome of our precious baby boy and I didn't hesitate for a second. I felt completely confident in every single person standing there. My husband and I kissed Camdyn a million times and handed him over to the team. We watched them turn the corner and were escorted to a private waiting room. I cried harder then I have ever cried in my life for about five minutes, wiped my eyes, and spent the next several hours walking the halls of Children's National. We were given a pager and received a few updates on Camdyn's surgery. The first was when Camdyn was put on bypass, the second was when he came off, and the third was to go back to the private waiting room to meet with the surgeon, Richard Jonas, MD.

The meeting with Dr. Jonas went really well. He told us Camdyn did great in surgery, he explained to us what repairs he made to Camdyn's heart, and shook our hands. Before we knew it we were going to see Camdyn in the Cardiac Intensive Care Unit (CICU).

Camdyn spent two days in the CICU and then three days in the HKU. He had no post-operative complications and a very uneventful hospitalization. It was amazing to see him intubated the first day with lines and tubes everywhere and then by the last day he was cooing, smiling, and acting like his old self (just pinker)! It was truly miraculous.

The nurses, techs, and doctors at Children's National were absolutely amazing. They were always professional, compassionate, and kind. Each person there touched us in ways that are unimaginable. There is no thanks that will ever be big enough. They gave our son the opportunity to live a normal, healthy, happy life.

Camdyn is turning 1 a week from today. He started walking at nine months and has a personality that you can't help but love. He is a beautiful child with an amazing story. We are so proud of him! He has changed our lives in countless ways. He's taught us to live every second to the fullest and that life is truly precious. He's given us direction and purpose and we thank god for him every single day.

Camdyn will need another surgery in the near future to correct his pulmonary stenosis. Although the idea of going back for another surgery is hard, we know he will be in great hands. We anticipate a smooth recovery and a long healthy future for Camdyn.

BIG thanks to Dr. Donofrio and Dr. Jonas!

Sincerely,

Erin and Bryan

Treatment Team

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