Claire Li and her husband Andy were hoping to give their son Noah a younger brother or sister. Heartbreakingly, not once, but twice, they were told their preborn baby had a rare condition known as Edwards syndrome (Trisomy 18) and was not expected to survive long after birth.
When Noah was two years old, the couple learned they were expecting their second child. But at the 12-week ultrasound, the doctor discovered that the baby had a cystic hygroma, a fluid-filled sac that stretched from the baby’s head to bottom. There was also higher than expected fluid thickness at the back of the baby’s neck. A week later they learned that their baby likely had a Trisomy condition such as Down syndrome, Edwards syndrome, or Patau syndrome.
“I was terrified and felt ill with worry, yet still determined that we could come through it,” wrote Claire in an essay for the UK’s Metro. When the couple went to the Fetal Medicine Unit, the doctor was not optimistic and advised them to have an abortion because their baby was unlikely to survive long after birth. “[B]ut this was our much-loved baby,” said Claire, and they refused abortion.
They agreed to undergo Chorionic Villus Sampling (CVS), a test that would take sample cells and tissue from the placenta to determine if their baby did indeed have a chromosomal condition. A few weeks later it was confirmed that their baby was a girl and that she had Edwards syndrome, also known as Trisomy 18.
When the couple went in to undergo an amniocentesis to collect amniotic fluid in hopes of finding out more details about their daughter’s health, they learned that their baby girl, whom they had named Hope, had tragically died in the womb at 18 weeks.
“We were heartbroken,” said Claire. That night, she began having contractions and baby Hope was born sleeping on May 14, 2015. They were unable to get a birth certificate for her, which added to their pain, because Hope’s death was classified as a “late miscarriage” because she died prior to 24 weeks.
“No proof that she even existed,” said Claire. “[…] I felt like I had failed our beautiful daughter.”
It was 2018 when the couple began thinking about having another baby. They asked the doctors what the chances were that their next child would also have Trisomy 18. They were told it was a less than one percent chance because the condition is not genetic or hereditary.
But at about 13 weeks, the couple learned their new baby was also at high risk for Trisomy 18 — and at the 20-week ultrasound, there were several markers pointing to the condition. Further test results confirmed that their new baby also had Trisomy 18. They let Noah, age five, pick the baby’s name. Hee chose Arlo.
“The constant worry that Arlo would die was always there, but we viewed every day he was with us as a blessing,” said Claire.
Arlo was born by elective c-section on November 7, 2018, at 39 weeks. “Our little warrior made it,” said Claire. “That love that came with him was overwhelming.” He lived for 20 days after his birth and the family was able to spend additional time with him after his death thanks to a special suite at the hospice center and a cuddle cot, which kept his body cool.
“At times, we felt helplessly alone, [and] we would have loved to talk to someone in a similar situation,” said Claire. “I want families to know that there are people who understand and have walked similar paths. The hardest part for me was juggling grief and life simultaneously.”
She now tries to raise awareness for miscarriage and infant loss to remove the stigma that exists. Working with the organization Same but Different, she is helping raise money for the charities and children’s hospices that help families get through such a difficult time.
“We still love to talk about Hope and Arlo, yet some people will not acknowledge or mention them, in case it upsets us or reminds us that they have died. The truth is, they are in our thoughts constantly. We will always have three children,” said Claire.
They work to keep the memories of Hope and Arlo alive, though the grief is sometimes overwhelming. By sharing their stories, Claire hopes that she can help other families live with and deal with their own pain from losing their precious babies.
Though many doctors advise abortion when a baby is diagnosed with Trisomy 18 and parents are told their baby won’t survive long after birth, efforts being made by certain doctors in the United States are helping these children live longer lives.
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