As I sit back and reflect on this past year, I can’t help but shed tears of both happiness and sadness. We are coming up to Cam’s first Birthday, a day that I feared we would never see.
And now it is a day that’s quickly approaching and I find myself crying to every Christmas song on the radio. Crying because our family has been so blessed with Cam’s journey and his love for life.
Cam’s journey began while I was still pregnant. On Aug. 17, 2012, I went to the hospital to have an ultrasound that would give me the exciting news of whether I was having a boy or girl.
My husband, Chad, and I already had a son, Brenin, who was 5 at the time, and he came with us. I think he was just as excited as us.
I had my fingers crossed for another boy, but either way I was going to be happy, as we had been trying to have another baby for the past 2 years. To our excitement the ultrasound tech announced that it was a boy.
We were all overjoyed, until she informed us that she needed to get the doctor because she could not get a good view of our baby boy’s heart. A red flag quickly popped into my head because I was closely monitored with Brenin due to my own heart conditions.
As we waited I tried not to panic, but inside I was exploding with fear. My doctor arrived and calmly told us what he saw. His words were a mumbled mess to me. His diagnosis: Hypoplastic Right Ventricle.
Of course we were stunned but also confused because we had no clue what it was. He asked us to come to his office so he could explain. I felt so numb both inside and out. Why my baby? And why after we have waited so long?
I was so confused and angry. We were sent home to think about having an amniocentesis to check for any chromosomal defects. We knew what we were up against as well as appointments with the maternal fetal medicine group at Akron Children’s.
I went in for my amniocentesis the following Monday and my results were back by the end of the week. A very long week at that. All the results came back negative for any chromosomal defects. Finally, we had something positive.
From the point of diagnosis, I did my research, went to doctors’ appointments and learned as much as I could about Cam’s congenital heart defect. The easiest way to explain it was that our son was going to be born with only one working ventricle in his heart.
Simply stated, he had half a heart. I thought how do you live with only half a heart?
We were soon working with Dr. Wasim Khan in the heart center at Akron Children’s. To say that we love him is an understatement. He educated us, drew diagrams and always answered my questions – even if it was the same question every visit.
He is the one that slowly put my feet back on the ground and pulled my heart back out of my stomach. I began to feel like we could do this and so could Cam.
Before Cam’s birth we met with pediatric cardiothoracic surgeons Dr. Philip Smith and Dr. Michael Spector. They explained that Cam would need a series of 3 surgeries. The first would take place days after birth, the second at around 6 months and his final one will be between his 4th and 6th birthdays.
Drs. Smith and Spector gave us statistics on how the surgeries go, Cam’s chance of survival and how his congenital heart defect will affect him as he ages. They were very honest, straight forward and gave us the truth.
Even though what they were telling us was hard to hear, I was confident that when Cam arrived he was going to be in the best hands.
Cam’s early arrival
Cam decided to have an early arrival and came 3 weeks before his due date. During a visit to have a non stress test done, Cam’s heart rate decelerated and I was contracting. Everyone thought it would be best to deliver that day.
Within 4 hours, I was prepped, ready for surgery and got to hear the first scream from my baby boy on Dec. 17, 2012, at 1:24 p.m. I didn’t get to see him because they immediately took him to the next room to get hooked up to medicine and monitors, but I heard him scream and that was good enough for me.
I knew there was a possibility that he would come out blue and not breathing due to his condition that affects the blood flow from the heart to the lungs. But not our Cam, he came out ready to fight.
Cam was immediately taken to Akron Children’s neonatal intensive care unit. Cam was doing as well as could be expected but his oxygen levels were in the low 70s. He had a bluish tint, but otherwise looked like a healthy newborn.
After being assessed, Cam was scheduled for his first heart surgery on Christmas Eve 2012. Dr. Smith and Dr. Spector explained that they would go through his back and through his ribs to place a shunt in his heart to help blood flow to his lungs. Dr. Smith visited with us before taking Cam back and went over every detail of the procedure. He promised to keep us updated during surgery.
The surgery lasted about 4 hours and Greg, the physician assistant, came out frequently to update us. Seeing them take your 7-day-old baby back for heart surgery was so hard because we had barely gotten to know our little guy and all kinds of fears were racing through our minds. What if we never see him again? Does he know he is loved?
Thankfully, Cam did amazing and became our Christmas miracle. Two weeks after surgery, we were dismissed to go home.
Once home the waiting game and stress slowly swooped in. We knew that Cam was going to need open heart surgery in around 5 months and his pulse ox was in the 70s, so he had a blue appearance that would make anyone nervous.
We saw a doctor at least once a week so that tended to calm our fears. But every day waiting for a surgery date got harder and harder. Cam was thriving and was a happy baby, but I was so overtaken by the fear of losing him. Dr. Khan’s reassurance – and knowing that we had 2 of the best surgeons – kept some hope alive for us.
Second heart surgery
The day finally came and Cam was scheduled for his first open heart surgery. The date is etched in my mind – July 29, 2013, at 1 p.m. Our now 7-month-old baby was going back to the hospital to fight his battle once again.
Nervous doesn’t even sum up how we felt. Explaining this to our now 6 year old was nearly impossible. He really struggled with the concept and was afraid of losing his brother. The love that our sons have for each other is hard to put into words. They light up every time they see each other.
As with his first surgery, we met with Drs. Spector and Smith again to go over the procedure and statistics. It was so hard to not cry because every word that came out of their mouth was terrifying yet it was the truth about what we were up against and how they were going to help see Cam through.
I knew that if these surgeons saved our son once, then they could do it again. Our surgery date came quickly and as we waited for them to take Cam back to the operating room, we met with the anesthesiologist and Dr. Smith.
Every question was answered, but when asked, “Do you have any more questions,” all I could think of was no, because it didn’t matter what question I had. Cam needed this surgery to stay alive. We had no other choice but to hand him over if we wanted to give him a fighting chance.
That good bye was by far the hardest. The surgery was the longest 6 hours of our lives but we were updated every step of the way. When Dr. Smith came out to talk to us, I just knew by the expression on his face that our baby boy was going to be all right.
To say these doctors and surgeons are our heroes is nothing short of the truth. They have allowed for our son to be a happy, healthy, active young child. I thank God for them every day because without doctors like Khan, Spector and Smith, children like our Cam would not be here.
Have faith in your doctors. I know we did and we have been blessed every day of this year because of them.
Thank you for not only giving us this first year with Cam but for also giving us many more years to come.
And I, as Cam’s mother, could not imagine my life not being a heart mom. He has changed me and made me a stronger person.