A young girl who made headlines when her surrogate mother refused $10,000 from her biological family to have an abortion has died aged eight.
Seraphina Nayleigh Harrell died on July 15 at Boston Children's Hospital from complications related to an infection and needed surgery. She and her family who had adopted her had celebrated her eight birthday just two weeks earlier on June 25.
'Still can't believe I have to talk about my baby in the past tense,' wrote Rene Harrell, the Seraphina's adoptive mother, on Facebook.
'Still trying to figure out how daily life is supposed to work without her in it.'
Thomas Harrell, her adoptive father, said: 'For the eight years she lived, she had a full life.'
'She had a lot of joy in her life and gave a lot of other people joy in ways that sometimes weren't expected.'
In 2011, a couple, whose identity has not been revealed, hired Crystal Kelley, then 29, to be a surrogate after they had trouble conceiving children.
A playground meeting in Vernon, Connecticut, saw Kelley agree to carry their fourth child for next nine months.
Doctor's thawed out two frozen embryos left over from the couple's past in-vitro fertilization procedures and put them in Kelley's uterus in October 8, 2011.
But in 2012 when Kelley underwent a routine ultrasound when she was five months pregnant, it showed that Seraphina suffered from a cleft lip and palate, a cyst in her brain and severe heart defects.
Serpahina had holoprosencephaly, a birth defect where the brain does not fully divide into separate hemispheres.
She also had heteotaxy, which meant several of her internal organs were in the wrong place. She had at least two spleens.
Previous ultrasound technicians had noted that Seraphina's stomach or spleen were hard to see.
A panicked phone call from the the couple then sparked a landmark abortion case that captivated America.
Holoprosencephaly and Heteotaxy
Holoprosencephaly (HPE) is a somewhat common birth defect that happens when the brain does not completely divide into the two lobes of the cerebral hemisphere.
As a result, there is a single-lobed brain structure that is coupled with skull and facial defects.
‘[HPE]often can also affect facial features, including closely spaced eyes, small head size, and sometimes clefts of the lip and roof of the mouth, as well as other birth defects.’
In most instances, the malformation is so severe that babies die before birth.
‘In less severe cases, babies are born with normal or near-normal brain development and facial deformities that may affect the eyes, nose and upper lip.’
‘This birth defect occurs soon after conception. It has a prevelance of 1 in 250 during early embryo development, and 1 in 10,000 to 1 in 20,000 at term.’
The best way to diagnose HPE Is with a CT or MRI brain scan. Molecular testing for a number of HPE genes. Treatment for children is individualized.
Heterotaxy occurs when a person’s internal organs are not arranged correctly in the chest or abdomen.
Subsequently, the most common complications affect the lungs, heart, liver, spleen and intestines.
‘Specific symptoms include not getting enough oxygen throughout the body, breathing difficulties, increased risk for infection, and problems digesting food.’
It may be caused by genetic changes, exposure to toxins when a woman in pregnant or the condition can happen sporadically.
Heterotaxy is estimated to affect one in 10,000 people across the globe, but scientists believe the condition is under diagnosed.
Diagnosis’ are typically done with images taken during a CT scan or an MRI. Other tests, including blood tests, can check the organs’ function levels. Treatment depends on the specific organs affected.
Sources: National Center for Advancing Translational Sciences and National Human Genome Research Institute
'She kept saying, 'There's something wrong with the baby. There's something wrong with the baby. What are we going to do?'' Kelley told CNN in March 2013. 'She was frantic. She was panicking.'
Doctors explained that little Seraphina would likely survive the pregnancy, but would only have a 25 percent chance at a 'normal life' and would need to undergo several heart surgeries. The biological couple wanted Kelley to terminate the pregnancy.
But Kelley disagreed and wanted to keep the child alive. Kelley did not want to raise a child, but was morally and religiously against abortions.
A letter written by Kelley's midwife and a genetic counselor read: 'Given the ultrasound findings, (the parents) feel that the interventions required to manage (the baby's medical problems) are overwhelming for an infant, and that it is a more humane option to consider pregnancy termination.
'Ms. Kelley feels that all efforts should be made to 'give the baby a chance' and seems adamantly opposed to termination.'
The couple's first three children were all born prematurely, with two of them spending months in the hospital.
The two sides were caught in a standoff that ended with Kelley moving states after the couple offered to pay her $10,000 to have an abortion.
Both sides lawyered up and argued over what was the best course of action for Seraphina.
Eventually the couple changed their minds about the abortion and instead wanted to exercise their legal right to take custody of the child - but would enter her into Connecticut's foster care system immediately afterwards.
But Kelley moved to Michigan, where state laws allowed her to be the legal parent and not the couple who hired her.
'Once I realized that I was going to be the only person really fighting for her, that Mama bear instinct kicked in, and there was no way I was giving up without a fight,' said Kelley at the time.
On June 25, Seraphina was born at full-term at 6lbs and 9 ozs.
Kelley gave Serpahina up for adoption and she was taken in by the Harrell family in Massachusetts.
The impasse between the couple and Kelley helped surrogacy agencies change the protocols they follow when making such arrangements.
'People heard about this case, and they got scared about skipping steps. That's good for the industry,' attorney Melissa Brisman told CNN this week.
Now, couples and surrogates take much more precautions and make sure they're on the same page about important issues.
A memorial service for Seraphina was held on Sunday afternoon in Andover, Massachusetts, at a field adjacent to Chapel at West Parish.
Rene asked that guests to wear face masks in honor of the young girl.
'COVID-19 has interrupted a lot over the past few months, and it wouldn't be very honoring of Seraphina's memory to put people at risk of contracting it,' wrote Rene on Facebook.
'Because the Commonwealth considers this a large 'unenclosed outdoor area' with enough space to practice social distancing, there are no regulations limiting attendance or requiring mask usage, but we are requesting that everyone planning to come wear a mask and will provide them for anyone who doesn't have one.'
In Massachusetts, there are more than 120,000 confirmed cases and nearly 9,000 deaths.
Seraphina will be remembered for living a full and joyous life in spite of her medical conditions.
'What I heard over and over from so many of her doctors was they could never imagine that someone with Seraphina's level of need could do as well as she did or be as joyful as she was,' Rene told CNN.
Rene added that the life Seraphina led in Massachusetts, surrounded by friends and loved ones, proved she was worth saving.
'What drove the conflict when Crystal was pregnant with her, was whether or not she'd have a meaningful life,' said Rene.
'And I think without hesitation, the answer to that question is yes, she did. Seraphina had a very, very meaningful and happy life.'
Seraphina could only speak a few words, but learned American Sign Language to communicate. She also could not walk, but was constantly moving around in her wheelchair.
Seraphina grew up in a loving Massachusetts home with seven other siblings, some of which also had medical issues and disabilities
'She could get herself around in a power wheelchair like nobody's business,' said Rene.
Seraphina's favorite words, according to Rene, was 'I love you.'
'She'd sign it and always add a little kissing sound. She was so loving. If you looked sad, she would comfort you,' said Rene.
'If you got even the slightest little poke, she would sign 'sorry' and then kiss your boo-boo.
'When her baby cousin cried, she would sign 'Baby, cry, Mama, milk.'
During Halloween 2018, Seraphina's seven older siblings masqueraded as the seven dwarves and gave her a special name: Bossy Dwarf.
'She had the most confident, self-assured personality, and she told everyone what to do,' said Rene.
For Halloween 2018, the Harrell children dressed up as the seven dwarves and called Seraphina (far left) Bossy Dwarf
Serpahina shared a remarkable bond with her siblings and enjoyed doing different activities with each.
'Nora and Nathan read to her. Laney painted her nails. Derecc played Darth Vader wars. She fought with the nine-year-old twins. Clare was her true playmate, because even though she is 18, in practice she and Seraphina were both around three, so they liked the same things,' said Rene.
It wasn't unusual for Seraphina to order Nathan, her 10-year old brother, to read Little Critter books to her.
Nathan would say he was the big brother character and Seraphina was the little sister.
After Seraphina died, Nathan requested a Little Critters book be placed insider her casket.
'They all miss her terribly. She was the centering part of our family. She was our heart and soul,' said Rene.
Loved ones who knew Seraphina said her life wasn't defined by her illnesses - it was love.
'There is just no getting around acknowledging the heartache of those who love her the most, who truly weren't ready to see her go.' read the obituary.
'But truth is, sadness is not the defining sum of Seraphina's story...love is. Seraphina's larger than life personality only grew throughout her life, and you never had to guess what she was thinking or feeling.
'At least once a day, someone would snuggle up to her and repeat the Seraphina family motto: 'For a girl who can't talk, you sure are never quiet!'
She leaves behind four older brothers and three older sisters.
