When it comes to nourishing a baby, there’s no substitute for a mother’s milk.
But sometimes, that’s not an option and it’s up to the community to help out.
That’s the case for little Lucy Holt.
Born in September with a potentially life-threatening genetic disorder, the tiny Oxford resident is facing a big trip to Boston in April for open-heart surgery and her mother, Laura (Beamer) Holt, is unfortunately unable to produce the vital breast milk she needs to grow stronger.
She breast-fed her other two children – Miles, 7, and Molly, 4 – with no problems, but the stress and depression brought on by Lucy’s frightening health issues has hindered her natural ability to produce milk.
“It’s just been too much,” said Laura, a nurse practitioner at Lakeside Medical Group in downtown Oxford. “In between (bouts of) crying, I take care of her. It’s been pretty hard.”
Laura reached out to the community on Facebook seeking donations of breast milk. She’s previously received some, but she needs more now, plus a large enough supply to last at least two weeks in Beantown.
“She drinks about 24 ounces a day,” said Laura, a 2002 Lake Orion High School graduate.
Breast milk donors must be in good general health, taking no medications and living substance-free, which means no alcohol, tobacco or illegal drugs. Potential donors are asked to please contact Laura via email at firstname.lastname@example.org.
Laura is very grateful to all those who have donated so far.
“Seriously, this has restored my faith in humanity,” she said. “The community has just been unbelievable.”
Lucy was born with Mosaic Trisomy 18, a genetic disorder caused by an error in cell division. Instead of the body’s cells each having the usual two copies of chromosome 18, they have three copies.
This error occurs in about 1 out of every 2,500 pregnancies in the U.S. and 1 in 6,000 live births, according to the Trisomy 18 Foundation website. A significant number of stillbirths occur in the second and third trimesters.
Chromosome 18 likely contains 200 to 300 genes that provide instructions for making proteins that perform a variety of different roles in the body, according to the U.S. National Library of Medicine website.
Trisomy 18 results in a variety of potentially life-threatening health problems and developmental issues.
To say little Lucy’s heartbreaking diagnosis caught Laura off guard would be an understatement.
“All of our pre-screening through my (obstetrician), everything came back negative because (Lucy) doesn’t have any physical markers for the Trisomy 18,” Laura said. “There’s a whole list of physical markers and she doesn’t have any of them. So, it was really a shock for us. We actually did blood testing when I was pregnant to check for genetic disorders and everything came back negative.”
In Trisomy 18, every cell in the body has three copies of chromosome 18. However, in Mosaic Trisomy 18, the extra copy is present in some, but not all, cells.
Laura said Lucy’s original blood test showed 75 percent of her cells have the third copy, but “that can change.”
Lucy is “pretty lucky” to have the mosaic variety, according to Laura.
“Typically, it’s less severe,” she explained. “And most hospitals (are more willing to treat) the mosaic (patients) than they (are) the full (Trisomy patients). Sometimes the fulls are denied surgery. When we met with our surgeon, he kept telling us that he’s doing this because she’s mosaic. (Hospitals) will treat the fulls, but they are more apt to treat the mosaics.”
That being said, Lucy still has more than her fair share of challenges ahead.
As a result of the syndrome, Lucy has four holes in her tiny heart, plus failure to thrive, which happens when babies don’t gain weight as expected.
“She can’t use the bottle like a normal baby because she’s so out of breath from her heart condition,” Laura explained.
Lucy needs to consume breast milk to help put on weight. “Babies tend to do better on breast milk in terms of growth,” Laura said.
More weight gives Lucy a better chance of surviving the surgery. “We need her as big as possible,” she said. “They keep pushing us to put more weight on her.”
In addition to adding ounces and pounds, breast milk helps build up a baby’s immune system, which is very important in Lucy’s case because she’s more susceptible to all the illnesses out there.
“With Trisomy 18, a common cold can put these kiddos in the ICU (intensive care unit) on a ventilator,” Laura said.
Breast milk also helps Lucy maintain regular bowel movements as kids with Trisomy 18 are prone to “severe constipation issues.”
Right now, Laura and her husband, Bryan, are focused on preparing Lucy for her surgery at Boston Children’s Hospital. “They’re Number One in the country,” Laura said. “We wanted to give her the best chance.”
The plan is to repair all four holes in Lucy’s heart during a single surgery as opposed to three separate surgeries.
Although the idea of her infant having major surgery is absolutely “terrifying” to Laura, she knows her daughter is a fighter and has been since birth. Lucy has already beat the odds just by being born.
“Studies have shown that only 50 percent of babies (with Trisomy 18) who are carried to term will be born alive, and baby girls will have higher rates of live birth than baby boys,” according to the Trisomy 18 Foundation website.
On top of that, Lucy was born with a knot in her umbilical cord, something that could have caused miscarriage or stillbirth had it cut off her oxygen supply.
“It’s quite amazing that she’s come this far,” Laura said.