Baby Development

‘Why Isn’t He Growing Right?’ – Mum Shares Son’s Journey with Prader Willi Syndrome

Megan wanted to be a mum since she was two years old. She grew up dressing baby dolls, pushing them in prams, and pretending to breastfeed them. Motherhood was always the plan.

Megan and her now-ex-partner tried for a year to fall pregnant. After several negative tests, she finally got a positive and was ecstatic to welcome a new little baby – a boy – into the world.

It was during the anatomy ultrasound that doctors discovered something wasn’t quite right. Bub was measuring quite small for dates.

The doctor’s office repeatedly checked my dates but I was positive on his conception date. His head size was appropriate but his femur bones were measuring two weeks behind where they should be and his stomach was a month behind,” Megan tells Love What Matters.

‘Why isn’t he growing right?’

The doctors explained that bub had IUGR (intrauterine growth restriction), which meant the placental blood vessels were restricted and the baby wasn’t receiving the necessary amount of blood flow and nutrients.

At 34 weeks gestation Megan had another ultrasound. Bub wasn’t moving around so the doctors made the decision to induce Megan. Her son, Gatlin Anest Stose was born via c-section on 3 November 2018.

Gatlin at birth PWS
Source: Facebook

Once released from recovery, they wheeled me to the NICU to see him. I had never seen a baby so small,” Megan recalls.

“He weighed only 3 pounds, 7 oz [1.67kg] and was 17 ¾ inches long. He had tubes all over his body and when they put him on my chest, I barely felt the weight of him. It’s an emotionally overwhelming and painful experience.”

Megan and Gatlin remained in the hospital for several days and during this time, doctors discovered a few complications. “Gatlin had significantly low tone, wasn’t demonstrating appropriate reflexes, his testicles hadn’t descended, and he had little-to-no suck. Simply put, he wasn’t thriving.”

Prader Willi Syndrome - Gatlin
Source: Facebook

The doctors decided to run genetic testing. When Gatlin was just three weeks old, Megan got the answer as to why.

Prader Willi Syndrome

Gatlin was diagnosed with a rare, genetic disorder called Prader Willi Syndrome. 

PWS happens in about one out of 15,000 births and is the most common cause of life-threatening childhood obesity. You may have heard Katie Price discussing the syndrome on her social pages – her teenage son, Harvey also has it.

PWS is caused by a chromosomal abnormality and affects the endocrine organ in the brain called the hypothalamus. This organ regulates temperature and pain, satiety and hunger, the wake and sleep cycle, fluid balance, fertility, and emotions. 

The weak cry at birth, the lack of suck for feeding, as well as the floppy and weak muscle tone – all early symptoms of Prader Willi Syndrome.

As time goes on, symptoms change. According to the Foundation for Prader Willi Research, “an unregulated appetite and easy weight gain characterise the later stages of PWS. These features most commonly begin between ages 3 and 8 years old.”

I was faced with a baby that was labeled as ‘Failure to Thrive’ and presented with literature that painted a bleak and miserable life ahead for my son. I was told he would have an insatiable hunger, become extremely obese, and have a significant intellectual disability.

The news was horrific and all-consuming and seemed like an impossible journey with detrimental side effects for my little boy. 

I had waited for so long to be a mum and now this? Can I do this? What do I tell people? Who will understand? Will my son have friends? Will he get to go to school?”

Megan and Gatlin transferred to a different NICU and Gatlin underwent surgery to have a g-tube inserted into his stomach in order to provide him with nutrition and fluids.

Gatlin g tube PWS

While most mums of newborns are learning how to bathe, swaddle and settle their babies, Megan learned how to use and clean his g-tube site and how to work a pump.

After 51 days in the NICU, Gatlin and Megan were given the clear to go home, two days before Christmas.

Gatlin prader willi syndrome
Source: Facebook

A new perspective of PWS

In between tube feeding and pumping, Megan started to research Prader Willi Syndrome and made an appointment with Prader Willi Syndrome Specialist and Pediatric Endocrinologist, Dr. Jennifer Miller.

She painted a new picture of a sweet, loving, and happy little boy who could do all things as long as he worked for them.

His journey would be more of a struggle and he would have to put more effort in than his friends but he had the ability and potential to be everything he and we hoped he would be.

I started to feel hope for our future.” 

Growing with Gatlin

Gatlin is now two years old and is the sweetest little boy you could meet. Megan shares updates on her son’s progress through Facebook page, Growing with Gatlin – Our Journey with PWS.

then and now Gatlin
What a difference two years makes! Source: Facebook

As Megan tells Mum Central, Gatlin can now clap, can be a touch cheeky, and loves attention and praise. He still requires a feeding tube but he is working on swallowing liquids and eating semi-solid foods. He is also learning to crawl.

mum central

mum central
Source: Facebook

Gatlin currently receives seven therapies each week over four days (Physical Therapy, Occupational Therapy, and Speech Therapy and AquaTherapy) usually two per day. He requires a pulse-ox machine to monitor him at night as well as oxygen for sleep apnea.

In recent weeks he has started to show a more mischievous and silly side to himself and I’ve really noticed his personality come out. I know he has and will touch the lives of every individual he meets.

Growing with Gatlin - PWS story
Source: Facebook

I still find it difficult not to compare him with other children his age but I know I am blessed beyond measure. Obviously, we are still in the beginning stages of PWS and have not reached a point yet where excessive hunger, obesity, or behaviour have come into play.

It’s hard to imagine those things but I can’t fear the future. Prader Willi Syndrome is a part of Gatlin’s story but I refuse to let it define him. 

All we can do is take one step at a time.”

You can follow Gatlin’s story through Growing with Gatlin – Our Journey with PWS.

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Avatar of Jenna Galley

Born and raised in Canada, Jenna now lives in Far North Queensland with her tribe. When the mum-of-three is not writing, you can find her floating in the pool, watching princess movies, frolicking on the beach, bouncing her baby to sleep or nagging her older kids to put on their pants.

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