Meet Colton! He is 3 years old and has been diagnosed with Hypo-plastic left heart syndrome & short-gut syndrome

Colton was diagnosed in the womb with hypo-plastic left heart syndrome at 18 weeks old. This is a congenital heart defect, one that is complex and rare (occurs in 1 in every 4300 births/year in US). It affects normal blood flow throughout the heart. As the baby grows throughout pregnancy, the left ventricle of the heart does not form correctly, resulting in this condition. The cause of HLHS is unclear and there are no known risk factors for the condition - it is not preventable.

Treatment for HLHS consists of 3 open heart surgeries in order for the right side of the heart to be restructured in order to pump blood to the rest of his body. The first surgery, Norwood, happens the first week of the baby's life. The second surgery, Glenn, happens between 4-6 months of age. The third surgery, Fontan, happens between 2-5 years old.

In addition, shortly after Colton’s first open heart surgery he developed necrotizing enterocolitis, a life threatening illness in the intestines where bacteria can cause necrosis of the small and large intestine. Unfortunately, antibiotics were not enough to help with Colton’s infection and all but 10cms of his small intestine and ¼ of his large intestine were removed, leaving him with an ostomy bag and dependent on IV nutrition (tpn and lipids) to grow with supplemental g-tube feedings, as tolerated.

Colton also has a clotting history where he has developed life-threatening clots that have almost taken him away from us. So he is on a life-long blood thinning treatment consisting of lovenox injections and warfarin.

Colton has had 2 out of his 3 open heart surgeries, with the next surgery projected to be in the summer of 2024. In terms of his short-gut syndrome, he has been able to have his ostomy taken down and we continue to work on weaning IV nutrition and increasing g-tube feeds.

I still to this day have not met another little babe who has both hypo-plastic left heart syndrome and short-gut syndrome.

His mom says his greatest strength's are Resilience, perseverance and being cooperative- I truly believe that his diagnoses have contributed to his strengths and in return his strengths have given him the courage and ability to overcome the many hurdles he has had to face in his life and the ones yet to come.

Colton is such a kind and easy going little boy despite everything that he has been through in his short life. He absolutely loves books and music, he especially loves to point to others to get them to dance with him. He also is a really hard worker and accepting of his diagnoses (as much as he can understand) and others. 

The sky's the limit - children like Colton with special needs, all have unlimited potential and they are all STARS and heroes - which is reflected with the stars in the art work. Each picture contains a heart to reflect Colton’s congenital heart defect. We are trying to explore space as we are all exploring our children’s special diagnoses and discovering new possibilities each day.

Colton at this time does not have the fine motor skills or dexterity to color; however he was able to stamp the stars, fingerprint the animals, blow bubbles onto the paper for the space helmets and create flames under the rocket ship with his hand print. We chose these specific animals because they are some of Colton’s favorite animals to visit at the zoo.