In September 2014, Jennifer and James Lo Tempio welcomed their son Daniel into the world after doctors told them he was “incompatible with life” because he had Trisomy 18, which is also known as Edward’s syndrome. The condition is caused by an error in cell division called meiotic disjunction. According to the Trisomy 18 Foundation, the condition is extremely rare and occurs in only 1 out of every 2500 pregnancies in the United States and about 1 in 6000 live births.
After Daniel was born, he spent the first 21 days of his life in the neonatal intensive care unit at Sparrow Hospital in Minnesota. ABC News reports that he had one kidney, a smaller than normal cerebellum, and three holes in his heart. He also needed around the clock care because of breathing problems associated with Trisomy 18. However, Daniel survived and on September 26th he celebrated his first birthday.
Pediatric otolaryngology Dr. Glenn Green treated Daniel and said he’s one of about 20 patients he has seen with Trisomy 18. He explained that most children with the condition die before age one because something as minor as a cold could be lethal; however, he also said he has treated a six-year-old with the condition. Dr. Green said, “Giving these kids medical care makes it possible for them to live past a year. We know that there are things that can be done.”
Eventually, Jennifer and James were able to leave the hospital because Daniel was doing better than doctors expected. Although this was a huge victory for their son, Jennifer explained that they were nervous about taking him home. She said, “Somebody was always awake with him. This was a very medically fragile child, even though he was doing great.” James added, “I’d spend days messing with the little sensor on the pulse oximeter. I wanted to see his pulse and everything, to know it was okay.”
At three months old, Daniel started choking in his sleep and had to have his tonsils removed to improve his breathing. Jennifer and James first noticed their son was struggling to get oxygen because he would turn blue. They explained, “He would cry and all the sudden he would turn blue. Then he’d start rolling his eyes and pass out. It was a scary deal. We had no idea why…”
Thankfully, doctors figured out that Daniel had obstructed sleep apnea, which was caused partly by a malformed palate and were able to address it. They gave him a tracheostomy to help him breath and now Jennifer and Jessica clean out his tube three to four times an hour so Daniel doesn’t choke on mucus.
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Although it has been a difficult year for Daniel, his parents believe he will continue proving doctors wrong and maybe even learn to stand and walk with the help of physical therapy.
As LifeNews previously reported, Republican presidential hopeful Rick Santorum’s youngest daughter has Edward’s syndrome but recently celebrated her seventh birthday. The Santorum’s recently published a book called, Bella’s Gift, about their family’s journey with their daughter’s condition. The book discusses the morality of abortion as it relates to children with disabilities, especially for children diagnosed with Trisomy 18.
Watch the clip below to learn more about Daniel and Trisomy 18.