New Jersey native Lindsay Carlisle, 40, never thought she and her husband would adopt a child with complex medical needs – until she met baby Sammy.
Sammy, now two, suffers from a newly identified condition called fentanyl exposure syndrome after his drug-addicted mother used heavily during pregnancy.
He was born with joined toes, genital deformities, a cleft palate, a small head, stubby limbs and various facial deformities, as well as severe learning difficulties.
Sammy took his first steps in July with the help of a doctor. He doesn't talk yet, but makes noises, has no hand strength and relies on a feeding tube to eat.
Mrs Carlisle said she and her husband never imagined they would adopt a child with complex medical needs
But after meeting him in the summer of 2021, she chose to adopt him in February, making that the best “yes” she ever said, calling him a “magical” child.
Mrs. Carlisle is pictured on the left with her biological son, with her husband standing behind. Sammy started out as their foster son, but the Carlisles adopted him in February
Born into opioid withdrawal, Sammy requires extensive, complex medical care and therapy
Sammy's path to optimal health will be difficult for Lindsay, who has a ten-year-old son with her husband.
Sammy will need ongoing occupational therapy to treat his physical disabilities and train him and his family in techniques to make his life easier, including assistance with writing, feeding himself and walking independently.
He followed a rehabilitation program in the hospital's neonatal unit for six to seven weeks. During this time, Mrs. Carlisle, her sister and her husband received extensive information about his condition and how to give him the best possible quality of life.
She told DailyMail.com that the early days were tough for the family, who at the time were new to caring for someone with such advanced medical needs.
“It was really the best thing to have him. There was a lot involved, a lot changed, our living room was a complete ICU when we first came home.
'It was stressful. We were awake at night because we didn't have nighttime nursing to make sure he was breathing and feeding.”
She added that his time in various forms of therapy, including occupational and speech therapy, will be long, but added: “What better family than us?”
When he first came home it was so stressful and he wanted to make sure I didn't hurt him and did everything right. Luckily, we have had the same nurse since he came home, which is one of the greatest blessings we could have
In addition to causing joined fingers, cleft palate, and bowed “rocker bottom feet” — named for the way bowed feet resemble the legs of a rocking chair — fentanyl exposure syndrome can lead to delays in the development of language and motor skills , learning difficulties and behavioral problems that are likely to persist into adolescence.
Sammy was born to a mother who had used heroin, cocaine and fentanyl during pregnancy.
Ms Carlisle first saw Sammy in the summer of 2021, when he was almost two months old, when she became his foster parent.
In February 2023, Sammy official became a member of the family.
Mrs Carlisle told DailyMail.com: 'He is literally the happiest child on earth, he just makes everything magical.
He has come a long way since their first meeting in 2021.
Mrs Carlisle added: “He is so much stronger now. He was small then and so vulnerable. Now he's just a skinny, great, strong, resilient kid.”
When he was born, Sammy underwent a tracheostomy, a surgical procedure to make a hole in his windpipe so he could breathe more easily. He is also still dependent on a feeding tube to eat and that won't change anytime soon.
At the same time, Mrs. Carlisle said: But given what he's been through – the hospital stays, the surgeries, the poking and prodding – you'd never know he's been through all these things.
“He's a regular guy, he goes to Phillies games, the movies, you name it, we go.”
Ms Carlisle said she and her family were hesitant to adopt a child with complex medical needs, but has since said it was the best 'yes' she has ever given
Mrs Carlisle called Sammy, now two, 'magical'
Fetal fentanyl syndrome came to the fore a group of doctors at the Nemours Children's Hospital Delaware when they saw several babies in the summer of 2022 who had been referred by local specialists or taken to the hospital shortly after birth due to feeding problems and noticeable physical characteristics.
Nemours' doctors' report was the first to reveal a link between the deadly street drug fentanyl currently sweeping the country and these birth defects, possibly due to the fact that patients often withhold their drug use histories.
They all had similar facial deformities and physical problems. They enrolled six patients to assess their symptoms, and later added four more babies. Sammy was one of the original six.
The babies all had small heads, short statures and distinctive facial features. Several babies had cleft palates, “rocker bottom” feet and deformed genitalia.
Tests ruled out a rare genetic condition, and a facial recognition algorithm that analyzed facial features ruled out fetal alcohol syndrome.
Then the researchers began to suspect that they were dealing with an entirely new condition.
Dr. Karen Gripp, Chief of Medical Genetics at Nemours Children's Health, said: 'Given the epidemic of fentanyl use, it is important to recognize this condition.
'Analogous to prenatal alcohol exposure causing fetal alcohol syndrome with long-term physical and developmental consequences, this new condition could affect many babies in life-changing ways.'
Fentanyl has become a public health scourge. It was responsible for nearly seven out of 10 drug overdose deaths in 2022.
The babies affected by maternal fentanyl use tended to have smaller heads and underdeveloped jawbones
In addition to underdeveloped jaws, some babies also showed cleft palate
Several babies had fused toes and rounded 'rocker bottom' feet
Some babies also had wider thumbs than normally seen, as well as a single horizontal crease in their palms, as opposed to the normal two.
From 2016 to 2021, the most recent year for which complete data is available, deaths more than tripled, from 5.7 per 100,000 people in 2016 to 21.6 in 2021.
Researchers believe that when a mother uses fentanyl during pregnancy, the drug disrupts the processes by which the body produces, uses and eliminates cholesterol, a fat molecule essential for building membranes around cells and producing hormones and vitamin D .
Fentanyl crosses the placenta, the organ formed during pregnancy that provides oxygen and nutrients to the fetus. Fentanyl can enter the baby's brain tissue.
Researchers identified a previous study that found “fentanyl in fetal brain tissue, concluding that there is rapid transfer of fentanyl to the fetus during early pregnancy and that the drug remains in fetal tissue for some time.”
Further evidence is needed to prove beyond a reasonable doubt that fentanyl is the cause of these birth defects, which is not yet an established scientific fact.
But the researchers argued that their findings were very convincing, noting that genetic conditions could be ruled out, but that the common thread among them was the use of fentanyl during pregnancy.