We were told there was a very likely chance that Tucker had CHARGE when I was 24 weeks pregnant. He had an absent stomach bubble and a TEF/EA. We went to the Children’s Hospital of Philadelphia for a second opinion, where a fetal ultrasound showed the TEF/EA, a small mandible, low set ears, and choanal atresia. We switched our care to CHOP and prepared for our long NICU stay.
Tucker spent 6 months in the NICU and had several surgeries, including a trach and gtube. He also had his TEF/EA repaired and had mandibular distractors. It was a long, hard 6 months, but it prepared him for the adventurous life he lived outside the hospital. We had tons of doctor’s appointments and therapies, but just as many fun days and adventures. Tucker was a thrill seeker and enjoyed everything outdoors. He loved to push boundaries and prove everyone who doubted him wrong!
Having a child with CHARGE is such a blessing, but it can be so hard and isolating. Finding a support system is crucial! We are blessed to be supported by our friends and family, and have an ever-growing CHARGE family who has been with us in our darkest of days.
