‘He’s so cold.’ She ripped off the blankets, just watched him breathe. I could see she was scared to tell me.’: Mom shares son’s Angelman Syndrome journey, ‘He constantly defies the odds’

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“To be honest with you, my entire second pregnancy something just felt ‘off.’ At that time, I blamed it on being stationed in Okinawa, Japan, and going through very troubling anxiety, depression, and homesickness. My husband was awaiting orders for us to go back to the states, due to the worsening back pain. The process was drawn out, with dates and orders changing every day, and the never-ending paperwork that’s required for practically anything and everything in the Military. I had just finished up my 4-year enlistment in the United States Marine Corps, so when the time came around for my husband to get out as well, to say we were ready for him to transition to civilian life and us start the next chapter of our lives would be an understatement.

My husband, Rylan, and I met in the United States Marine Corps in 2013. We were both Motor Transport Operators in the same unit, so we were super close and knew right away, we were each other’s person. Rylan and I soon married in 2014 and welcomed our first son into the world in May of 2015.

Courtesy of Lindsey Craig

The pregnancy with my first son, Bentley, was amazing and I didn’t have any trouble until my last trimester. I carried him for a very long 42 weeks and was put on bed rest towards the end of my pregnancy. I was on my way to work one morning when a really bad feeling came over me. All morning and throughout that day while working, I didn’t feel that well, but brushed it off and blamed it on the ‘beautiful’ side effects that come along with being 30 weeks pregnant. Finally, the workday was coming to an end and I decided to play safe than sorry and went to get checked out by my doctor. That was the first time I truly experienced motherhood intuition.

Courtesy of Lindsey Craig

Bentley was 32 weeks along at that point, and for the first 15 minutes in triage, they couldn’t find his sweet little heartbeat. Finally, after full-blown panic in the room, being questioned by the Anesthesia Department, handled by every nurse on shift, and being stripped and prepped for C-section, they captured a faint, slow heartbeat. I spent the next 2 days in the hospital getting monitored and getting a plan together on how I was going to safely carry until the due date. Due to the condition of Bentley’s heart, which was soon diagnosed as Fetal Arrhythmia and fortunately had gotten better over time, I had weekly appointments until I finally went in for induction at over 41 weeks pregnant.

The labor was terrible and it took me 4 days in induction to finally have him! I lost a lot of blood from hemorrhaging and became really sick from being in labor for so long after my water broke. Bentley was also really sick and spent a total of 2 minutes in my arms before they swaddled him up and took him to the NICU. Our journey was off to a really rocky start, but once we made it out of the hospital 2 days later, we began a beautiful and healthy life as a family of three.

Courtesy of Lindsey Craig

Before we knew it, we were celebrating Bentley’s second birthday in our tiny apartment in Okinawa, Japan. In true Craig family fashion, things moved fast and by December of 2017, we were announcing the pregnancy of another little baby BOY on the way! I was 18 weeks pregnant when we finally returned home to the states, and the relief I felt not having to deliver my baby overseas was exceptional. We decided to settle back into my home state, North Carolina, to continue raising our family, and start college together.

I quickly began getting all my doctors lined up, and went in for an ultrasound at 20 weeks. Luckily, the baby’s heart was fine, as this was a major concern of mine given past experiences. His vitals were good, he had ten fingers and ten toes, but something wasn’t quite right.

Courtesy of Lindsey Craig

Baby’s stomach was measuring significantly behind compared to the rest of his body. Once again, I was back to frequent monitoring appointments and weight checks. By the time I was 38 weeks, the stomach size issue became less of a worry, and his body measurements and weight were all proportionate. To avoid any complications like my first pregnancy, my doctor gave the green light to induce at 39 weeks.

Courtesy of Lindsey Craig

Declan’s delivery was perfect and everything I imagined it would be. I labored for only a short amount of time and pushed for only 5 minutes. Everything was going so perfectly, and I was beaming with pride and relief and so excited about getting this sweet boy home to meet his big brother. The first night was the start of many, many restless nights for us. The entire night and through the early morning, Declan was so cold. I mentioned it to my nurse and she instructed me to do more skin on skin, and he would warm up eventually.

Courtesy of Lindsey Craig

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. The clock hit 7:00 a.m. and it was finally time for shift change and my time to express my concerns with a new nurse. Immediately, she scooped Declan from my arms, ripped off all the blankets I had wrapped around him, and just watched him breathe for what felt like an eternity. I could see her eyebrows bow with concern, and I knew the next words out of her mouth were going to break me.

Courtesy of Lindsey Craig

Extremely low blood sugar, low body temp, low oxygen, and a high heart rate kept Declan admitted to the NICU for a total of one 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. It’s normal for babies to lose a little weight after birth but at the rate Declan was losing, it was considered unhealthy. Throughout the week, tests and labs were done and we were soon discharged with no answers.

Courtesy of Lindsey Craig

We finally went home, and that’s when things started to go downhill, and fast. The first night was rough. He couldn’t latch to me or a bottle, and what he did manage to get down would come right back up. 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 and told me the chances of Declan getting admitted to the Children’s Hospital were very high. She prescribed medicine in hopes it would give Declan some relief and told us to come back for a follow-up. I took this opportunity back at home to pack, as I knew what was in store for Declan and me the next day.

Courtesy of Lindsey Craig

We spent one long, scary, unpredictable, and emotional month in the hospital where 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. A month in the hospital and we left with no diagnosis. He went home with an NG tube in his nose to provide nutrition, a few medications, and a serious lineup of appointments with a handful of specialty doctors.

Adjusting to life at home after weeks and weeks of being in the hospital was rough the first little while. We tried our best to make things as normal as we could, even though nothing felt normal. The NG tube didn’t last very long for Declan. He threw up everything he ate, no matter if he received it by tube or mouth. So his GI team decided to take the tube out since he pulled and gagged on it constantly anyway.

Courtesy of Lindsey Craig

It was a constant struggle to get him out of the failure to thrive category, despite our efforts. More weeks and months passed and we received no new updates, no red flags on lab work, and were on a long waiting list for the genetics doctor where we live. I had my mind made up it was Cerebral Palsy, but still wasn’t sure— nobody was. There wasn’t much we could do but sit, wait, worry, and pray. Whatever it was, we prayed it was something we could manage, possibly cure, and be over with so Declan could finally live a healthy, typical life.

At 7 months old, we had a pretty scary admission happen. I was on the way to drop Bentley off at preschool when a Pediatric Neurologist called me and told me she heard about Declan through our family pediatrician, and she could see him that same day and complete an EEG to see if she could pinpoint anything that could be causing all these issues. I quickly called my husband, went home, grabbed our emergency bags, and off we went.

Courtesy of Lindsey Craig

A 45-minute EEG led to a 2 day EEG. We spent a total of 4 days in the hospital and once again, left with no answers or diagnosis. However, we did leave with the new knowledge Declan has seizure activity in his brain. This was a huge surprise to us and put us on edge even more. Our hands were tied and we had no one else to rely on except a genetic doctor, and that appointment was months away.

Courtesy of Lindsey Craig

It was about 7:00 p.m. on a beautiful spring night in April, and we were about to put the boys down for the night when my phone rang unexpectedly. It was Declan’s Pediatric Growth Specialist calling me on her personal cell phone. I knew the second I saw her number this was going to be the night we found out the diagnosis. She was scared to tell me, I could sense it. Her voice was shaky, and she told me to sit down. ‘Have you ever heard of Angelman Syndrome before?’ My heart sank. I didn’t have any idea what Angelman Syndrome was. The emotions that overcame me were unreal. She then told me, ‘He will live a normal life expectancy but it’s not curable and he will need assistance his entire life.’

Courtesy of Lindsey Craig

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. We cried about the brother Bentley lost when we found out the diagnosis. Declan and Bentley are still brothers, and their bond is special and stronger than any other I know, but this syndrome will rob them of so many things young brothers are supposed to do growing up. We cried about our own lives, which are forever changed, and the new paths we must go down not just as parents, but as a couple and individually as well.

Courtesy of Lindsey Craig

With the rising of the sun the next day came a fire inside of me to make things different for Declan and others like him. I dove deep, learning everything I possibly could about Angelman Syndrome. I joined all the groups, pages, and completely submerged myself in the ins and outs of his new diagnosis.

Angelman Syndrome (AS) is a rare neuro-genetic disorder that occurs in 1-15,000 births worldwide. AS is 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. With a name as beautiful as Angelman, it’s no surprise this syndrome comes with a few positives, right? Individuals with AS are known for their bright smiles, and happy, excitable demeanor.

Courtesy of Lindsey Craig

Declan smiled at me at only one week old, and 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.

Things were starting to head in the right direction for us. We finally had a diagnosis for Declan, which allowed us to properly advocate and treat him and find the best resources and community. Declan was about to turn 8 months old when we were able to get him seen by a GI surgeon. By this point, Declan had seen three different GI doctors, and not one could help Declan and provide relief for him and get him gaining weight. Weighing only 12 pounds, Declan was .31 percentile in weight and was labeled ‘failure to Thrive’ once again, leading the surgeon no other choice but to recommend a G tube placement and Nissen Fundoplication surgery. For us, this was considered a win, and a huge step in the right direction of getting our angel healthy and THRIVING!

Courtesy of Lindsey Craig

The G tube was placed, the Nissen was completed, and Declan made it out of surgery and recovery beautifully. We were in the hospital for a few days, but went home ready and motivated to get Declan to gain weight! Weeks passed and while the G tube surgery presented its own new issues and side effects for Declan, it ended up being Declan’s saving grace. Declan went from 12 pounds to 20 pounds and has been there ever since.

The summer came quickly, and so did Declan’s prominent seizure activity. He went from having none to having multiple drop seizures a day. They have been gradually increasing and have gotten longer in frequency and length ever since. Much like our journey with feeding and nutrition, our journey with Declan’s neurological state has been complicated and hard to navigate. We had to let go of Declan’s first neurologist because of the lack of concern on his part. During our last appointment, he told me, ‘Declan’s seizures are like a computer when it freezes up on you. It stops for just a minute and goes right back to normal activity when it’s finished. We shouldn’t worry because Declan will be okay, they do no harm.’

Courtesy of Lindsey Craig

This wasn’t good enough for me and I immediately started the hunt for a new Neuro team. I knew there HAS to be someone or something out there who can help Declan get these seizures under control that inhibit nearly every aspect of his life. Finally a month ago, at the start of 2021, we got a referral to a new Neurologist. This Neurologist has not only years of experience in Pediatric Neurology, but she also has experience working specifically with children who have Angelman Syndrome.

Since then, we have been navigating through the troubles that come Declan’s way. Weekly therapies, medical appointments, hospital admissions, staying on top of countless medications, and feed rates and times on repeat, every single day. 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? How much therapy did we squeeze in? These thoughts constantly run through my head day and night and they are impossible to shut off.

Courtesy of Lindsey Craig

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.

Courtesy of Lindsey Craig

Declan is almost 2.5 years old now and although he is still below the first percentile in weight and battling with daily high drop seizure counts, he is thriving and improving every single day. Declan is constantly defying the odds that have been stacked against him all his life. He continuously breaks the barriers that are placed on him in all aspects of his life and I feel so blessed I am the mama that gets to witness such beautiful miracles every day. We get to celebrate all the moments, big and small, no matter what they are. Each day is special and unique with Declan and we are continuously learning and growing together.

Our little family of four has been through a lot and has learned so many things together the past 3 years. Our bond is stronger than ever and we have found out what really matters most to us, each other. Life hasn’t been easy, and we know the road ahead will continue to have obstacles we must face and tackle together. We will forever be growing, adjusting, and learning day by day. I am excited to watch my family grow and do great things, whatever their level of abilities may be.

Courtesy of Lindsey Craig

Join us as we share our journey, advocate, fight for inclusion, and raise awareness not only for AS, but all other disabilities as well. If more people know, the more that can potentially be done about it. Knowledge is power, and if sharing our story and journey can help people, then I will write, share, and advocate for Declan and others like him till my very last breath.

Today, scientists are so very close to finding a cure for humans with Angelman Syndrome, and have already reversed symptoms of AS in the mice models in the lab! Much of the pioneering and critical research being done has been funded one dollar at a time from parents, families, loved ones, friends, and generous people all around the world. The research being done has led to revolutionary clinical trials that hold the potential to treat and ultimately CURE Angelman Syndrome. Fundraising is a big part of the Angelman Syndrome Community and since diagnosis day, we have been committed to doing and raising whatever we can to help Declan and other angels like him!”

Courtesy of Lindsey Craig

This story was submitted to Love What Matters by Lindsey Craig. You can follow their journey on Instagram and their blog. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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