When Declan Craig was born, he was labeled with “Failure to Thrive”. These three words will break any parent’s heart.
He was severely jaundice, constantly cold, lethargic, and unable to latch. After some tests, they determined the newborn had extremely low blood sugar, low oxygen, and a high heart rate.Â
Naturally, parents Lindsey and Rylan Craig were riddled with fear. What was wrong? Why wasn’t he thriving? How can we fix it?Â
This was just the start of the countless unanswered questions that would become Lindsey and Rylan’s life as they sought out answers for their son.Â
‘Something just felt off’
Declan was Lindsey’s second little boy. Her first son, Bentley was diagnosed with Fetal Arrhythmia in utero but it has since gotten better over time.Â
When Lindsey discovered she was pregnant again, she and her husband were both enlisted in the United States Marine Corps and stationed in Okinawa, Japan.
“To be honest with you, my entire second pregnancy something just felt ‘off’,” Lindsey admits to Love What Matters, where she shares Declan’s story.Â
During her pregnancy, the family relocated back to the United States and prepared for baby #2. Her 20-week ultrasound revealed that something wasn’t quite right with baby’s stomach size. It was much smaller in proportion but all this seemed to even out as the pregnancy continued.
‘He was so cold’
Declan was born at 39 weeks in a smooth delivery and Lindsey was beaming with pride as she settled in for that first hospital night with your newborn.
The first night was the start of many, many restless nights for us,” she recalls. “The entire night and through the early morning, Declan was so cold.Â
After hours of skin-to-skin, blankets, thick jammies, and cranking up the room temp a few degrees, I couldn’t get Declan to warm up. He wasn’t latching to my breast and would hardly even open his little eyes. He was beginning to look lethargic and I noticed his breathing was very deep and forceful.”
In the morning the doctors ran tests. They discovered little Declan had extremely low blood sugar, low body temp, low oxygen, and a high heart rate. He was admitted to NICU for a week.
During that week, he also battled with dysphagia and significant weight loss. He had a serious case of jaundice and was so yellow he looked like an old-school baby doll.
His struggle with weight gain shortly led him to be labeled ‘Failure to Thrive.’ Three words that are a punch in the gut and made me feel like I failed my newborn baby.”
One week later and Declan was allowed to go home; however, the family still had no answers.Â
No diagnosis, no name to put with what was causing all his issues
Declan’s health went downhill rapidly fast at home. He wasn’t latching, wasn’t taking a bottle and anything he did manage to get down would come right back up.Â
By the time we got him to his appointment, he looked very unwell and was in pain and very uncomfortable. We met his new pediatrician and she saw very many red flags.”Â
Declan and Lindsey moved to the hospital where they remained for one month. It was a month of pure hell.Â
Declan went through every test, scan, poke, stick, lab, and exam you can think of. Every single morning, I waited in absolute terror for the medical team to make their rounds and give me the yes or no to the scary diagnoses they had predicted.
Every day, it seemed like I was researching and digging up information on some rare disorder, trying to find something that made sense for him.”
One month later and Lindsey and Declan returned home, still without a diagnosis. Instead, Declan had an NG tube in his nose to provide nutrition, a few medications, and a serious lineup of appointments with a handful of specialty doctors.
Week after week, Lindsey and Rylan watched their little boy struggle to eat, praying he was putting on weight. He also started to have seizures which is one of the most terrifying experiences for parents.
They continued to meet with specialists, to go through the long list of disorders, to hope they would find a diagnosis.Â
Finally, after meeting with a genetic specialist, Lindsey got a phone call she had been simultaneously hoping for and dreading for the past eight months.Â
‘Have you ever heard of Angelman Syndrome before?’
Lindsey hadn’t. But she made it her mission to learn everything she could about it. She joined all the group pages and completely submerged herself in the ins and outs of his new diagnosis.
What is it?
- Angelman Syndrome (AS) is a rare neuro-genetic disorder that occurs in 1-20,000 births in Australia. Â
- It’s caused by the loss of function of the UBE3A gene in the 15th chromosome.
- People who have AS may face many daily challenges such as, developmental delays, epilepsy, walking, and balance disorders, gastrointestinal issues, and little to no speech.
However, people with Angelman Syndrome, like the beautiful children in the video above and the little boy in the image below, also light up the room with their smiles.
They are happy, excitable, and positive and, although they will need assistance for the rest of their lives, they have a normal life expectancy.Â
My husband and I held each other and cried for one night. Just one. We allowed ourselves to cry and be sad about the things Declan will not get to do in life.
We cried about the hardships he is going through and will continue to go through with this diagnosis.”
Everything finally made sense
With a diagnosis came a lot of answers. Everything finally made sense and the puzzle pieces were fitting together a last.
First of all, Declan was fitted with a G Tube placement and Nissen Fundoplication surgery. Then a very strict regime of weekly therapies, medical appointments, hospital admissions, staying on top of countless medications, and feed rates and times on repeat, every single day.
With this new life comes a new list of anxieties for Lindsey.Â
Do his clothes look tight today, or loose? Do we need to add more water to his feeds today? When is the last time Declan had a bowel movement?
How many seizures did he have today? How long did he wear his braces today?Â
These thoughts constantly run through my head day and night and they are impossible to shut off.”
‘But this is our life now, and that’s okay’
Declan wakes up every single day ready for what is in store for him. He fights so hard, and never gives up. He is the strongest little boy I have ever met. I remind myself of this often because it’s important to remember he didn’t bring this on himself. This is just something that happened to him; to all of us, for that matter, and nothing could have prevented it from happening.
It is my job to take care of him, fight and advocate for him any time I need to. Angelman Syndrome may have taken away his ability to speak, but it will never take away his voice in this world.”
The beautiful newborn who was once labelled “failure to thrive” is now a cheeky toddler. Although he is still below the first percentile in weight, dealing with daily seizures and nonverbal, he is thriving and improving every day.Â
Declan is constantly defying the odds that have been stacked against him all his life. Even though life is hard for him, he always lights up the room with that smile and brings so much joy to everyone around him. He is our earth Angel.”
To learn more about Angelman Syndrome, visit Angelman Syndrome Australia. You can follow Declan’s journey through Instagram.Â
