- Sammy was born in withdrawal after his birth mom used fentanyl while pregnant
- His jaw and joints were underdeveloped, has cleft palate, relies on feeding tube
- READ MORE: Newborn condition causes conjoined toes and ‘rocker bottom feet’
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 mom used the drug heavily while she was pregnant.
As a result, he was born with conjoined toes, genital deformities, a cleft palate, a small head, stubby limbs and several facial malformations, as well as severe learning difficulties.
Sammy took his first steps in July with the help of a doctor. He is not talking yet but makes sounds, lacks hand strength, and depends on a feeding tube to eat.
Mrs Carlisle is pictured with her biological son on left, with her husband standing behind. Sammy started out as their foster son but the Carlisles adopted him in February
Sammy, born in opioid withdrawal, requires extensive complex medical care and therapy
Mrs Carlisle said that she and her husband never thought 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.
Sammy’s road to optimal health will be tough to navigate for Lindsay, who, with her husband, has a 10-year-old son.
Sammy will require continued occupational therapy intended to treat his physical disabilities and train him and his family on techniques to make his life easier, including help with writing, feeding himself, and walking on his own.
He was in a rehab program within the neonatal unit in the hospital for six or seven weeks, during which time Mrs Carlisle, her sister, and her husband received extensive information about his condition and how to give him the best quality of life they could.
She told DailyMail.com that the early days were tough on the family who at the time was new to caring for someone with such advanced medical needs.
‘It truly was the best [having him]. A lot came with it, a lot of changes, like our living room was a complete ICU when we first came home.
‘It was stressful. We were up 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 will be long but added ‘what better family than us?’
When he first came home it was so stressful and wanted to make sure i wasn’t hurting him and doing everything right. Luckily we’ve had the same nurse since he’s come home which is one of the biggest blessings we could have
In addition to causing conjoined digits, cleft palates, and bent ‘rocker bottom feet’ – named for the way bent feet resemble the legs of a rocking chair – fentanyl exposure syndrome can lead to delays in language and motor skills development, learning difficulties, and behavioral issues that will likely last into adolescence.
Sammy was born to a mother who had used heroin, cocaine, and fentanyl while pregnant.
Mrs Carlisle first laid eyes on Sammy in the summer of 2021 when he was nearly 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’s literally the happiest child on earth, he makes everything just magic.
He has come a long way from their first meeting in 2021.
Mrs Carlisle added: ‘He’s so much stronger now. Back then he was little and so fragile. Now he’s just a lean mean awesome strong resilient kid.’
When he was born, Sammy underwent a tracheostomy, or a surgical procedure to create a hole in his windpipe to make it easier to breath. He also still relies on a feeding tube to eat and that may not change for a while.
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 went through all these things.
‘He’s a regular kid, he goes to Phillies games, the movies, you name it, we go.’
Mrs Carlisle said she and her family were hesitant to adopt a child with complex medical needs but has since said it is the best ‘yes’ she’s ever given
Mrs Carlisle called Sammy, now two, ‘magical’
Fetal fentanyl syndrome became front of mind for a group of doctors at Nemours Children’s hospital in Delaware when, in the summer of 2022, they noticed several infants referred by local specialists or brought to the hospital for feeding difficulties and distinct physical features shortly after birth.
The Nemours doctors’ report was the first to uncover a link between the deadly street drug fentanyl currently tearing its way across the country and these birth defects, possibly due to the fact that patients often withhold their history of drug use.
All of them shared similar facial malformations and physical problems. They enrolled six patients to assess their symptoms, and another four infants were added later. Sammy was one of the original six.
The infants all had small heads, short stature, and distinctive facial features. Multiple infants had cleft palate, “rocker bottom” feet, and malformed genital organs.
Testing ruled out a rare genetic condition, and a facial recognition algorithm that analyzed facial features ruled out fetal alcohol syndrome.
That’s when the researchers began to suspect they were facing an entirely new condition.
Dr Karen Gripp, Chief of the Division of Medical Genetics at Nemours Children’s Health, said: ‘Given the fentanyl use epidemic, it is important to recognize this condition.
‘Analogous to prenatal alcohol exposure causing fetal alcohol syndrome with long-term physical and developmental consequences, this novel condition may impact many infants in life-changing ways.’
Fentanyl has become a public health scourge. It accounted for nearly seven out of ten drug overdose deaths in 2022.
The babies found to be affected by maternal fentanyl use had smaller heads and underdeveloped jawbones overall
In addition to having underdeveloped jaws, some of the babies also showed cleft palates
Several babies had conjoined toes and rounded ‘rocker bottom’ feet
Some of the babies also had broader thumbs than what is normally seen as well as a single horizontal crease on 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, rising from 5.7 per 100,000 persons 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 that is essential for building membranes around cells as well as producing hormones and vitamin D.
Fentanyl passes through the placenta, the organ that develops during pregnancy which provides oxygen and nutrients for the fetus. Fentanyl can make its way into the baby’s brain tissue.
Researchers identified a previous study that had found ‘fentanyl in fetal brain tissue, concluding that there is rapid transfer of fentanyl to the fetus in early pregnancy and that the drug remains in fetal tissue for some time.’
Further evidence is needed to prove without a doubt that fentanyl is the cause of these birth defects, which is not yet settled scientific fact.
But the researchers argued that their findings were highly compelling, noting that genetic conditions could be ruled out but the common thread among them was fentanyl use while pregnant.