By Mariel Moody
Anthony is a 2-year-old sweetheart who goes by the name Ife. Ife (Ee-Fay) means LOVE in the Yoruba language, and he lives up to his name. He was born in September of 2021 and weighed only 4.9lbs. He is tiny but mighty, with a huge personality that he loves sharing with new people. Baby Ife was seven months old when we received his genetic testing diagnosis of CdLS. With his birth so small, we often wondered if something else was happening that we could not visibly see. After a visit to the Pediatrician Dr. Diaz, we were referred to Dr. Woods, a Geneticist at Valley Children’s Hospital. We received our diagnosis a few months after the blood draw.
Ife did not move much during pregnancy, and around 37 weeks, he was ready to enter the world. The doctors worked very hard to keep him in the womb so he could continue growing. Around that time, the provider noticed he weighed an estimated 4.2 lbs, and they were unsure why. After careful consideration, we found it best to be induced at 38+2, and a tiny 4.9lbs baby boy came. During the hospital stay, NICU was recommended due to his small size and issues with feeding. We stayed five days in the hospital and went home with high hopes. Once home, Ife struggled with weight gain and formula/breast milk tolerance.
CdLS affects Ife in many ways. He is not very mobile besides crawling, struggles to stand independently, has learned to sit unassisted at around one, has several medical issues, and is slow to grow. He depends on his tube feedings, nurses, and medications daily to have successful days. Feeding, digestion, and excretion are the number one issues Ife has. He currently has a GJ Tube but started with an NG tube at six months and graduated to a G Tube at 12 months old. In February of 2023, Ife was experiencing a “coffee ground emesis” from ulcers in his stomach lining and had to be switched to the GJ tube to help his stomach heal. He lives an atypical life for a 2-year-old child. He is developmentally and globally delayed, so life looks a little different through his eyes.
Ife is a very sweet little guy who likes meeting new people. He enjoys studying facial expressions and copying noises he may hear you make. He loves the ABCS and rock songs his nurses play for him. He crawls around, explores this new world, and tries tasting everything and everyone within his reach. Ife enjoys being outdoors, feeling the breeze blow through his hair, watching passersby, looking into the bright blue sky, and checking out the clouds. He is the kind of guy who enjoys the simple things in life.
Having a child is hard enough, but having a child with a rare genetic condition is very challenging due to the lack of information about his condition. Taking it upon ourselves, we studied his condition, joined groups, and reached out to other families of special needs children and other CdLS families. We often worry and wonder about his capabilities and overall quality of life, but he always surprises us. He exceeds our expectations every time. Though he is “mild appearing,” people make comments that can be seen as offensive due to their lack of understanding and not being used to dealing with children who may be disabled. Several people have commented on his appearance or medical devices out of curiosity, especially when he had his NasoGastric Tube. Having a child with a rare condition makes you feel like you are in the spotlight, and some comments feel filled with pity or misunderstanding. People judge you for what your child should be doing at their age due to neurotypical standards for growing children. People often assume this is something that gets better with time or something he will grow out of. We still grieve the loss of the life we thought our child would have. To not be judged or ostracized, not to struggle with basic necessities of life skills. We will continue to worry for him but also embrace, cherish, and pour into him.
The CdLS Foundation has helped our family by being there and letting us know we have a solid foundation to lean on. We can get our questions answered, share and hear experiences, meet other families, and gain access to resources we never knew were available. The Foundation makes us feel less alone because special needs parenting can be very isolating. Ife went to the Irvine Family Gathering in February of 2023 and met some fantastic staff and other kiddos with his exact condition. Without the Foundation, I often wonder where we would be.
Getting a genetic diagnosis for your child is not the end of the world, though it may feel like it. Reading about CdLS on the internet does no justice to the quality of life these individuals possess with family and support. Ife lives a beautiful, very happy, and fulfilled life. He enjoys the fundamental things and spending time with those he loves. Every moment matters. Celebrate every milestone and accomplishment.
Celebrate every negative test result, and NEVER STOP ADVOCATING.
Ife would like to give a special shout-out to the adults he loves and who are a part of his daily life.
- Mom and Dad: Mariel and Anthony.
- Nurses: Monica and Juanita.
- Aunts, Uncles, Cousins, and extended family. Grandma Helen and Grandma Shawna.
- GI: Dr. Yueng
- The entire Valley Children’s Network and all specialists involved in his CARE TEAM.