Every month, one medically complex child is selected to receive a financial gift from the Legendairy Littles program. During April, Legendairy Milk is pleased to feature Ezra.
After years of infertility, Ezra’s parents gave up hope that they would be able to naturally conceive a child. Approximately 6% of women struggle to get pregnant, while 12% of women have an increasingly difficult time carrying a pregnancy to full term. After deciding to take a break from trying to conceive, Ezra’s parents found out that they were pregnant.
During a genetic test at 11 weeks pregnant, it was discovered that Ezra has Down Syndrome. Down Syndrome occurs when an extra full or partial copy of chromosome 21 during cell division. Every person with Down Syndrome is unique and Ezra’s parents quickly learned that they are his best advocates. Ezra was born in August 2021, 7 weeks early. At birth, it was discovered that Ezra also has Imperforate anus. Imperforate anus happens when the anus is missing or does not have a hole. The anus is the muscle ring that allows a person to hold bowel inside, then release it later during a bowel movement. This condition is not fully understood but believed to be due to an abnormal development of the rectum when the embryo is still forming. It occurs in approximately one in every 5,000 infants born each year.
Ezra was in the NICU for five weeks. At the start of his stay, he was focusing on the growth that needed to take place because he was born early. Towards the end of his NICU stay, Ezra began to gain weight quickly and only had the task of learning to feed from a bottle. Ezra’s mom has worked hard to pump and provide breast milk for him.
Since coming home in September 2021, Ezra has been working through physical therapy to continue to meet his milestones. His parents are so excited to share that he was able to roll over at the end of February. Because of Down Syndrome, some of his milestones are delayed, but Ezra is a rockstar and does not let anything stop him from trying to accomplish everything that is put in front of him.
While at home, Ezra enjoys laying on a blanket on the floor. He is very active and loves to play with a fox toy that has teethers attached. He also enjoys watching Star Trek with his Dad while Mom takes a nap.
The journey around Down Syndrome and Imperforate Anus diagnosis can be intimidating, but Ezra’s parents have taken their job of advocating for their son seriously. They want to offer encouragement to others who are just learning about a diagnosis and reminding them that babies with Down Syndrome are still just happy, thriving babies. If you know of parents who are just encountering a large diagnosis of their Little, Ezra’s parents would like to encourage you to share in the excitement of the new Little and not offer apologies. Littles are such a blessing and quickly become the loves of your life, regardless of a diagnosis. Ezra brings so much joy to the lives of his family and friends. His love and excitement for life is contagious and his parents are so excited to see all that he will accomplish in life.
Ezra had his first large surgery in March 2022. He is scheduled to have his second surgery in May 2022. Beyond that, Ezra sees multiple specialists regularly including physical therapists who are helping him meet milestones. His family will use the Legendairy Littles financial donation to help with the out of pocket travel costs of his two surgeries. Additionally, Ezra will require many years of follow up appointments to ensure his surgeries are successful and he continues to meet milestones.