My baby almost died from a rare condition that means she can't BREATHE – but now she's thriving

A mum has shared how her baby was born with a rare genetic condition and almost died after birth – but now the tot is thriving.

Lorin Messer, 27, a stay-at-home mum from Newberry, Florida, was told her baby, Finlee June, may be born with a slightly smaller jaw – but did not know the full extent of her condition until she was born at 35 weeks in February 2021.

She went through three sets of genetic testing – all of which returned back as normal – and was advised that a small procedure at birth could correct the baby’s jaw.

But when Finlee was born, they realised it was a much more serious issue, and she was diagnosed “at first glance” with Treacher Collins Syndrome.

Treacher Collins Syndrome is a rare genetic disorder caused by a single gene mutation, which can affect the development of bones and other tissues in the face.

The signs and symptoms of TCS vary greatly, ranging from almost unnoticeable to severe.

Most affected individuals have underdeveloped facial bones, particularly the cheek bones, and a very small jaw and chin (micrognathia).

Incredibly, neither dad Jeremy, 29, nor Lorin carry the affected gene, and her older sister Maylee, two, was also unaffected.

Finlee was immediately placed in the NICU where she remained for six weeks with a ventilator helping manage her breathing.

“We feared every day that it was going to be our last with her.

“Her health was very, very delicate. The diagnosis wasn’t important to us, her life was. We would love her unconditionally no matter what, we just wanted her to be stable.

“There was a wire and/or tube for everything keeping her alive. A ventilator, a feeding tube, a pulse ox, chest tubes.

“Just getting to hold her took two nurses and an entire thought-out process with there being so much to maintain while doing so.

“Seeing her surrounded by wires was the hardest part. There were days I felt selfish for putting her through this.

“I fell asleep hoping that one day she’d be thankful for the decisions we were making on her behalf.

“She was the size of a small baby doll, she had the darkest curly hair, dark eyes, bronze skin, and the smallest little chin. Thankfully, she always looked so peaceful – never in pain.”

There was one particularly terrifying incident where Finlee aspirated on milk while no nurses were around.

Lorin said: “She ended up having to be bagged and developed tracheitis as a result. Prior to this she was being weaned off the ventilator, but she ended up back on it for eight more months.

“It was a scary, upsetting time.”

Finally, the plucky tot was discharged from hospital in March and went home.

Lorin said: “Finlee requires much more than her sister. She has a tracheostomy tube, gastrostomy tube, as well as hearing aids.

"Each of these items comes with a set of specific instructions for maintaining. This is not to say she is difficult by any means – she just has different needs.

“Life has changed drastically. I went from a stay-at-home mum to having a self-taught nursing degree.

“Getting out of the house now requires three diaper bags, and one or two bags full of medical supplies.

“Her needs change from day to day. In the morning we clean around her trach and tubes and put her hearing aids in. Then I mix her food and put it into her feeding pump for breakfast – we do this another four times throughout the day.

“The rest of the day involves keeping her and her sister entertained, naps, and some suctioning of Finlee’s trach when she needs it. Once a week we do a complete trach change, unless something prompts it early such as a blockage.

“Finlee is surprisingly more low maintenance than her sister!

“But having a special needs baby isn’t easy, you get the looks every place you go.

“9/10 people are staring because she’s different, she’s interesting. I enjoy engaging in informative conversations about her when the opportunity presents itself, explaining how and why she is unique.

“I feel that education is huge in cases like our little Fin, because some people who approach others with negativity don’t necessarily mean it, they just don’t understand.

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