A mum-of-two who had to tell her first ‘angel baby’ that “it was okay to die” while holding him in her arms has since discovered she has an incompetent cervix and is now on a mission to help others.
Shatoya Lewis, 34, a Licensed Practical Nurse, has lost three babies since 2015 – and she and her twin sister Latoya Young have created one of the largest Neonatal Intensive Care Unit (NICU) communities for parents to share their stories about premature babies.
Shatoya, who is originally from New York but now lives in West Virginia, USA, lost her first child, James, in 2015 after delivering him prematurely at 19 weeks and three days.
She said losing him “changed [her] completely”.
“I had to tell him it was okay to die, and that was really hard for me,” she said.
“They call it comfort care and I don’t know why they call it comfort care.
“They should call it torture because they put the baby in your hands and say you have to comfort him while you’re in distress.
“I had to set aside my feelings, just hold onto him and kiss him and tell him ‘it’s okay’.”
She continued: “It changed me completely; it really changed my world. I mean, I really just felt like a different person from that day on.
“After you lose a child, you’re never the same again.”
It was after the loss of her first baby that she discovered she has an incompetent cervix – a condition where weak cervical tissue causes or contributes to premature birth or the loss of a child.
She said it is “shocking” that many mothers do not know about this.
“The doctor said to me, ‘the only way for you to know that you have an incompetent cervix is for you to lose a baby,’” she said.
“I don’t think a mother should have to lose a baby at 20 weeks for her to know that she has a weak cervix. It shouldn’t have to come to that.”
Shatoya says she was advised by doctors that she should not get pregnant until approximately one year after she lost James, but three months later, she fell pregnant with her daughter, Zaria.
Due to having an incompetent cervix, Shatoya said she had to have a cervical stitch – known as a cerclage – at 13 weeks and three days to “keep Zaria in”.
Shatoya then went into early labour, once at 19 weeks and again at 22 weeks.
She was given medication to stop her contractions and was told to stay on bed rest, but then at 32 weeks, it was discovered that she had signs of pre-eclampsia – a rise in blood pressure.
She said: “I was admitted to the hospital and was there for three days.
“They tried to stop it [the birth]; they wanted me to stay pregnant as long as possible.
“At 32 weeks and three days, that’s when my organs started shutting down and Zaria’s heart rate started to fail, so we went ahead and they delivered her.”
She added: “All I was thinking about was my baby surviving as I’d had a loss, so I just kept thinking about her.”
After a matter of minutes, Zaria was born on August 10 2016, and weighed 3lb 12oz.
Despite being “so tiny” and having to be fed through a tube for 29 days after birth due to complications with her breathing, Zaria was “healthy”.
Zaria stayed in the NICU at Holy Cross Hospital in Maryland for 32 days and Shatoya was there every single day, just “looking at her”.
But even then, Shatoya was still grieving the loss of James.
“I was very emotional. It was like, even though I had lost a baby, a part of me thought I was about to have him all over again,” she said.
“It was like I was looking for the same baby.”
Shatoya explained that, at first, she felt she “didn’t really have a connection with Zaria”, but this soon changed and she was “so excited” when she could finally bring her home.
Now, Zaria is six years old and Shatoya said her growth has been “amazing”.
“I feel like it’s flying by,” she said. “She was just so tiny, and so little and fragile, and not eating, and now she’s taken over my kitchen.
“She loves eating, and she loves baking and cooking; she loves talking. She’s athletic, she does gymnastics, and she loves maths at school, it’s her favourite.
“Her growth has just been amazing.”
Shatoya sadly lost two more babies after the birth of Zaria – she had a miscarriage at 14 weeks and two days in 2017, and a miscarriage at 12 weeks in 2018.
She explained that strength, love and healing, along with support from her family, helped her through these difficult times.
And on August 29 2020, Shatoya gave birth at 38 weeks and four days to her second child, Caius.
He ingested meconium during birth and spent several days in the NICU, but he is now “thriving”.
She said her twin sister Latoya is her number one supporter and best friend, and together they have created a community for parents to raise awareness and share their stories about premature babies, called ‘Our Little Preemie’.
Their Instagram page, which was set up in 2017, now has more than 81,000 followers, and the twins have written two books – ‘Faces of the NICU’ and ‘Alphabet for NICU Babies’.
Shatoya feels there is not enough information or support out there for mothers who have premature babies, or incompetent cervixes, which is something she wants to change.
She said she wants to see updates for premature babies and how they’re progressing.
“I need other mothers and fathers to know there are more people like me out there,” she said.
“I feel like it’s my mission for other people around the world to see these babies thrive, not even just the people around the world, but the doctors as well.”
To find out more about the twins’ mission, visit their Instagram at www.instagram.com/ourlittlepreemie.