After three years of IVF treatments, Elizabeth (Elizabeth has asked that we keep her last name private,) MSN, ARNP, PNP-BC, CLC, CPN learned that her baby, her last frozen embryo, would be born with at least a bilateral cleft lip.
“My husband, the entire pregnancy after we found out about the cleft lip, was hoping it would go away, that the ultrasounds were wrong or it would fix itself,” Elizabeth remembers. “He was in complete denial.”
But after their son was born, Elizabeth overheard her husband compare him to the popular Disney character Nemo; He is our Nemo. Nemo had a gimpy fin and our son has a birth defect, she recalls him saying.
“For him to have that pride and comparison to Nemo is breathtaking,” she goes on.
Elizabeth, a pediatric nurse practitioner and doctoral student at the University of Florida, currently teaches undergraduate nursing students at the local children’s hospital.
Her first job as a registered nurse was in the NICU which strengthened her support for human milk and breastfeeding.
“I saw first-hand the benefits of breast milk for those tiny little babies, not only for the children but for the moms as well,” she says.
It was after the birth of her son that she became especially determined to earn lactation credentials so she could help families achieve their infant feeding goals.
In May, Elizabeth completed The Lactation Counselor Training Course.
Elizabeth says she always thought she would have four children, but several years of IVF treatments proved to be exhausting.
“It was one of the most difficult times of my life,” she says.
In the beginning, Elizabeth shared her IVF journey with friends and family in search of support. But when treatments failed, it became too draining.
“I would be curled in the fetal position crying hysterically while my poor husband had to be the one to tell everyone ‘not this month,’” she remembers. “I got tired of everyone feeling sorry for us…”
She acknowledges that people’s remarks like “It’ll just take time,” were intended to be encouraging, but they weren’t.
“Unless you have lived the agony of wanting to be pregnant and month after month not getting pregnant, you have no idea,” Elizabeth explains.
Co-workers were unaware of the heartache Elizabeth endured those years of trying to conceive, but she remembers crying the entirety of her drive to work, washing her face inside and proceeding to her duties.
“Going to work I felt like a stranger. A separate person,” she recalls.
It was on Mother’s Day 2014 when Elizabeth and her husband publicly announced their pregnancy.
Two years of breast milk
Elizabeth always planned to breastfeed her baby. Breastfeeding was one of the things she looked forward to most as a mother. And after learning of her baby’s bilateral cleft lip, she had only one question: “May I still breastfeed?”
In preparation to feed her baby with special needs, Elizabeth contacted lactation counselors, met with a cranio-facial surgeon, made spread sheets with pumping times, and talked to everyone she knew in the medical field about cleft disorders.
Despite avid preparation, Elizabeth wonders if the feeding support she received immediately following the (frank breech, unmedicated, vaginal) birth of her baby could have been better.
“We did not get skin to skin after delivery which still makes me sad,” she says. A lactation specialist helped Elizabeth to pump her milk, but her baby wasn’t even in the room when the specialist came to visit her.
Presently, the hospital where Elizabeth birthed is Baby-Friendly. Looking back, she wishes this had been the case during her stay.
“I know it would have truly made a difference,” she says.
While Elizabeth eventually learned that her son’s latch and transfer would not allow him to breastfeed directly exclusively, lactation specialists from the hospital’s Mother Baby Tea and their occupational therapist, helped her use the supplemental nursing system (SNS) and Haberman feeder. Elizabeth provided breast milk for her son for two years!
“There is absolutely nothing better in this world than feeding the son you love and smelling him and holding him close,” she reminisces.
Breastfeeding her baby also gave her the gift of feeling connected to other women. While nursing her baby at a doctor’s office, she looked up to the smile of another woman.
“It was one of those knowing smiles only women who breastfeed can share,” she says.
When he isn’t busy at weekly occupational and speech therapies for feeding difficulties and a speech delay, Elizabeth’s son, now two years old, loves to swim and read books about Nemo.
There’s a lot to anticipate throughout Elizabeth’s family’s journey; A child with cleft disorders will undergo an average of nine surgeries before she/he is 21 years old, she reports. She asks that we all remain sensitive to the ongoing challenges cleft disorders present, especially after watching videos by adolescents affected by cleft disorders.
“I cried and cried hearing about all the teasing these young people endured,” she says.
Reflecting on her own journey, Elizabeth says: “Motherhood, breast feeding, cleft disorders are all hard. If I can help or make a difference for just one mom and baby, that is all I can ask.”