Photo By Michelle Gordon | Finn Cronin, 3, was born with Mosaic Down syndrome, the rarest form of the condition....... read more read more
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Maj. Shanna Cronin remembers exactly where she was and what she was doing nearly four years ago when she received the phone call that would change her life.
“It was a Tuesday; I was in my office, I was 10-and-a-half weeks [pregnant], and I got a phone call from my doctor about the results of some prenatal tests,” she said. “I was working on other things so I hit the speakerphone – it’s a phone call – I expected her to say, ‘everything looks great.’”
Things did look great until her doctor told her the results of the chromosomal abnormality test. Cronin tested positive for trisomy 21. Unfamiliar with the diagnosis, Cronin asked what that meant and her doctor said the baby had an 85 to 90 percent chance of being born with Down syndrome.
Cronin froze; she called her husband and told him the news. The dual-military couple decided to go home to process the information, and of course, to consult Google about everything from test accuracy to life impacts of Down syndrome.
Three days later they met with health care experts in maternal-fetal medicine, where they received all of the statistics to help them make decisions.
“They said your rate of miscarriage does not go down. You’ll have a 25 percent chance of miscarriage or stillbirth throughout the pregnancy,” Cronin recalled. “Your rate of a child being born with Down syndrome and a heart defect is 50 percent. Your rate of having a child born with intestinal issues, meaning they can’t be fed, except by a feeding tube is 25 percent. Then they offered to terminate the pregnancy.”
The Cronins declined. They wanted this baby and they decided to do everything they could to ensure the odds, though bleak, where in their favor. They were stationed at Fort Belvoir, Virginia, at the time, and Cronin started going back-and-forth to Walter Reed National Military Medical Center in Washington, D.C., for appointments and prenatal testing.
“They did a lot of scans, and each time things were coming back pretty normal and not showing signs of a child with Down syndrome,” she said. “The femur was measuring normal, the nose bone was normal – all of the other indicators were normal, so they actually started lowering my percentage and thinking maybe the test was a false positive.”
It’s a boy
Finnegan Robert Cronin was born at 3:51 p.m., October 15, 2016 at Fort Belvoir Hospital. He was perfect. In fact, Cronin said the doctor did not initially think Finn had Down syndrome. The signs weren’t there. Babies with Down syndrome typically have low muscle tone, smaller stature, lower-set ears, almond-shaped eyes, and a single palm crease on the hand.
“Finn didn’t have any of those things,” Cronin said. “They were pretty convinced — enough so that they didn’t want to do a blood test.”
As much as Cronin wanted to put aside her worries and just enjoy her newborn baby boy, she requested the blood test based on the prenatal test results. They were discharged from the hospital two days later, and two weeks later they received a call from the doctor. Finn has Mosaic Down syndrome.
Types
Humans have 46 chromosomes in 23 pairs. Babies with Down syndrome have an extra copy of chromosome 21, for a total of 47 chromosomes. However, that extra copy is not always located in the same place.
According to the Centers for Disease Control and Prevention, there are three types of Down syndrome, with the most common being trisomy 21, meaning each cell in the body has three copies of chromosome 21 instead of two copies. This type is the most common, 95 percent of people with Down syndrome have trisomy 21.
The second most common type is Translocation Down syndrome, which affects 3 percent of the Down syndrome population. It occurs when an extra part or a whole extra chromosome 21 is present, but it is attached – or translocated – to a different chromosome rather than being a separate chromosome 21.
Finn has the rarest form. Only 2 percent of people with Down syndrome have Mosaic, which means some of their cells have three copies of chromosome 21, but others have the typical two copies. This is why his doctors did not think he had Down syndrome at birth, because people
with Mosaic Down syndrome often have fewer features of the condition, depending one how many cells are affected.
“He has a mixture of chromosomes,” Cronin said. “When they did his blood test, [the results indicated] 10 of the 20 cells had 46 chromosomes and 10 of the cells had 47. The doctor said, ‘well, this means we don’t really know how it will affect him. Depending upon where the cells are located, he may be very affected, or he may not be affected.’”
‘Finn’s gonna be Finn’
Cronin did research on Mosaic Down syndrome and found several examples of people not knowing they had the condition until they experienced a specific delay or disorder. In one case, a woman who was unable to get pregnant, found out she had it after a blood test revealed she had Mosaic Down syndrome, and the only cells affected were on her ovaries.
Cronin called her father after learning about the condition, expecting sympathy. Instead she got words of encouragement. Finns’s diagnosis was not a death sentence; it’s just part of who he is.
“My dad has been great through the whole thing,” she said. “When we found out about Mosaic, I told him, ‘I have no way of knowing if he’s going to have delays or not,’ and he said, ‘Shanna, it means Finn’s gonna be Finn.’ And that has stayed as our family motto, Finn’s gonna be Finn.”
Cronin said his biggest delay is with feeding. He did fine with nursing, but when it came time to wean him to milk from a cup or a bottle, he refused. He also would not eat traditional early-toddler food.
“He was very apprehensive about things going in his mouth – he never put toys in his mouth – he still doesn’t,” she said. “He never took a pacifier; he never took a teether when he was teething. He doesn’t like things in his mouth.”
It wasn’t until after two life-threatening bouts with pneumonia, both of which involved Finn getting medevaced to Walter Reed, that the Cronins got answers. Finn was aspirating fluids to his lungs each time he swallowed. The cells in his throat and esophagus are the most affected by Mosaic Down syndrome.
“He could not control the flow of milk the same way he could with nursing, so they put him on a feeding tube,” Cronin said. “Once they got his breathing stabilized, they did a swallow study, which showed that he was swallowing incorrectly. [The doctors] told us the feeding tube was potentially permanent and if it went on longer than six months, they would do surgery to put a [gastrostomy tube] straight into his belly.”
Finn was 14 months old. After a month at home with a feeding tube and daily practice with an empty, slow-flow bottle, the doctors conducted another swallow study. He passed.
It’s been 15 months since that test and Finn is still using that bottle to ensure fluid doesn’t aspirate to his lungs. Cronin said the next step is transitioning him to open cups and foods thicker than purees. Finn turned 3 years old earlier this week, and although he is in feeding therapy three times a week for his swallowing issues, he’s on par with with peers when it comes to gross-motor and fine-motor skills, as well as cognitive functionality.
Awareness and acceptance
October is Down Syndrome Awareness Month and the National Down Syndrome Society is the leading human rights organization for individuals with Down syndrome. Cronin became involved with the NDSS when they were stationed in northern Virginia and she continues her work with them now that they are stationed at Fort Bliss. As an athletic ambassador for the organization, she participates in relays and 5Ks to raise awareness and ultimately, to affect policy changes.
Cronin is passionate about her son’s future so she works with NDSS to protect and enhance items like ABLE accounts – tax-advantaged savings accounts for individuals with disabilities – and fight items like subminimum wage.
“There are still subminimum wage laws, meaning an individual with disabilities can still be paid under minimum wage,” she said. “NDSS has done a lot of campaigning about it. They are trying to get Congress to overturn that law.”
So, what would Cronin tell herself if she could go back to the moment she received the call from her doctor about the prenatal test results? She said she would tell her how much the good outweighs the bad.
“Yes, there will be tough stuff, like his hospital stays and feeding issues, but that is just a small part of him. Most of the time, he’s a normal 3-year-old boy.” she said. “He loves to swim, he loves to play at the park, and he truly is such an energetic spirit. My heart smiles watching him when I drop him off at daycare, as other kids run up and hug him – he gives the best hugs.
She continued, “Although I never prayed or hoped for child with Down syndrome, I honestly would not change a thing. Down syndrome is a part of him, and I love him for him, and that is why I would tell myself, or a new parent, ‘It’s not scary. It may sound like it when you’re first told because it is unknown, but it ends up being fantastic, and you learn so much more in the process.’”
| Date Taken: | 10.17.2019 |
| Date Posted: | 01.13.2020 17:35 |
| Story ID: | 359049 |
| Location: | EL PASO, TEXAS, US |
| Web Views: | 541 |
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