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Advocate Spotlight: Colter's Story

by Kami S. on Monday, February 10, 2014

Bobbie Cross

Heart disease has forever changed our family.  My son, Colter, was born on November 17, 2011. I had a healthy and normal pregnancy. We were able to take him home 24 hours after, he passed all of the required health screenings and passed as a seemingly healthy baby boy. Unfortunately, the hospital neglected to do one very important test called the pulse oximetry screening.

3 days later we took him to his pediatrician for his first checkup. It was there we found out our beautiful new baby boy had a birth defect. The doctor heard a very loud heart murmur and chose to check his oxygen levels, they were bad. . He immediately made arrangements for us to see a cardiologist. 5 hours later we received the most terrifying news that our perfect angel was broken inside; he was diagnosed with a severe Critical Congenital Heart Defect called Truncus Arteriosus. Our son's heart defect was undetected until he was 4 days old and without surgery; he would die.

We went to Seattle Children’s that night and tried to prepare ourselves for the unknown. Colter was 11 days old when he had his first open heart surgery. After a long, complicated surgery; we were told they didn't know if he would make it through the night. His situation wasn't a day by day or hour to hour he was surviving minute by minute. He was in some pretty rough shape. 8 days later they were able to get him off of life support known as ECMO only to face more challenges.  Colter had contracted pneumonia in his right lung that was extremely resistant to antibiotics making it very difficult to manage.

December 17th Colter crashed, every medical intervention they tried wasn't working, and the infection was ravaging his tiny body.  They planned to remove Colter's right lung, but as a last minute decision chose to put him back onto ECMO. The Dr. told us our son was deteriorating, and this was their last ditch effort to save his life. The doctor told us there was a slim chance Colter would survive and he suggested us to say goodbye to our son. We said our goodbyes and waited.

1 hour later they came out smiling, no interventions were needed, by the grace of god he started improving little by little, minute by minute. It was a miracle even in the medical world! 10 days later we were discharged from the CICU and remained in the hospital for an additional month for antibiotic treatment.

We took home Colter with fulltime oxygen, a feeding tube, 24/7 continuous feeds, meds literally around the clock, less than 25% heart function and a lot of doubtful doctors. We were faced with a challenging first year, it was trying and exhausting. As a mother these were all challenges I welcomed. The Seattle team was sure Colter would be back, and believed the odds of him keeping his own heart were grim. Colter survived, and with every hurdle life threw his way he leaped it with grace. Colter is alive and well today, matter of fact if you didn't know his story you'd probably think of him as a normal kid.

Being a heart mom you deal with a variety of emotions but the 2 most prevalent would be fear and joy. Fear of the future, fear of the unknown, fear of his next surgery, and fear of death. But there's one thing that being a heart mom has taught me that is that our joys are greater than any fear of the future. When I think about surgery day that was the 1st time we got to see what Colter was made of.

At only 11 days old he showed us his tremendous amount of strength and his will and desire to live. I looked up the word, persevere it's defined as follows: To continue in a course of action even in the face of difficulty or with little or no prospect of success. Despite Colter's dips and turns for the worst he always seemed to persevere. His tenacity to live was something that was undeniable from the beginning.

After each scare it was always followed by great JOY.

I feel so honored to be able to share Colter's story, I hope to continue to raise awareness about the importance of the pulse ox screening. This needs to be done on all newborns before they are discharged to go home. We were very lucky that this test was taken as it saved Colter's life. I think all new mothers and fathers should be educated about what a simple, non-invasive and CHEAP test this is. I feel it's so important that we remember the statistics, 1 in every 100 birth a baby is born with some form of heart defect . Heart disease is the #1 killer of our babies in the United States. And lastly a child is 2x more likely to die from heart disease than ALL forms of childhood cancer combined. So we need to be taking advantage of our resources and technology Pulse Ox Screening is a no brainer! It saves lives, my son is proof of it.

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