‘I sat on the line stunned. ‘There are only 34 cases ever on record. He is as rare as they come.’ I peered in at him and thought, they were wrong, somehow this was just a fluke.’

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“I married my high school sweetheart just one year after we graduated. Almost a year to the date after our wedding we had our first born and less than two years later, our second was born. I always felt like I wanted more kids but after having pre-cancer cells aggressively removed from my cervix, I was told ‘it would be next to impossible to conceive, and if I ever did, I’d never carry to term.’ These words hit hard but my husband had just gotten home from his second infantry deployment with the Army and I knew timing wasn’t right. I went on to have a few early term miscarriages and the older our first two grew, the more I tried to accept us being a family of 4.

Courtesy of Kassy Stuart

When our youngest was almost 8 years old I found out I was pregnant again. This time though our story was different, and we had our rainbow baby 9 months later. Because of her, all scar tissue across my cervix that had made fertility an issue in the past was gone. Because of the large age gap in our kids we decided to try for one more. I gave myself a 3-month window to get pregnant. I am big on the term ‘everything happens for a reason,’ and I felt if it didn’t happen during that time, it wasn’t meant to be. On the last month of trying, I successfully conceived our 4th child.

Everything with this pregnancy was rather normal. I was a little more tired than usual, but I also had 3 kids, my youngest was 1-year-old, and my husband works out of state for months at a time, so it didn’t raise flags with me. Despite my numerous ultrasounds, everything looked good! At 17 weeks we learned we were having a boy! So exciting. We had two girls and one boy, so this would even our count. He was measuring a little small but my babies had all been on the smaller end and my OB didn’t think much of it. At 20 weeks we had our big anatomy scan. He was still a little on the small end and two ultrasound techs went back and forth on whether or not they could see testicles. One said yes and the other said no. My doctor suggested we do a blood scan to test genetics, which would look for major known syndromes. It would also tell us a clear ‘boy or girl.’ I went ahead with the scan, and nothing genetically worrisome came back. It was a clear ‘boy.’ I was overjoyed. That was my last ultrasound.

Courtesy of Kassy Stuart

Towards the end of my pregnancy my belly really started to grow. My doctor thought he was probably just catching up in size. I felt more and more uncomfortable and at 34 weeks I really felt off. I mentioned it to my husband, who had been away almost two months working, that I felt like I was getting close. Thankfully he switched his original ticket and flew home to Utah earlier than planned. He had been home less than 24 hours when I went into labor.

My labor with our son was crazy fast. I arrived at the hospital at 8:30 p.m. and I was already dilated to a 5+. Even though I was 35 weeks to the day, this was no false alarm. I labored with him in the birthing tub up until it was time to push. I was able to have a natural delivery with him, it was beautiful and I was so grateful for how it went. Kenai Christopher was born just before 11:00 p.m. That is when our world was absolutely altered with such a great force.

Courtesy of Kassy Stuart

I got my beautiful natural delivery, but I did not get delayed cord clamping or to have him lay on my chest, which were other wishes of mine. His cord barely reached the top of my thigh and he was struggling to breathe. I kept saying to my husband in shock ‘why is he so tiny?’ With the size of my belly we were sure he was going to be our biggest. The NICU team got him breathing a bit better and prepped to admit him to their floor but they did let me kiss him before they took him and that was devastating. I told my husband to go with Kenai while I cleaned up. I was nervous, but our first daughter was a NICU baby and in my mind I was gearing up for the same.

Courtesy of Kassy Stuart

I was anxious to make my way to the NICU to get better acquainted with my new tiny baby. I walked in there so proud and excited to see the sweet life I had created. I walked into the very room our daughter had been in and instantly knew our situation was much different than before.

Kenai laid in his isolette, his tiny body was almost lifeless and he already had so many wires and cords attached to him. The doctor in the NICU at the time soon entered the room and she didn’t waste a minute of my time trying to sugar coat the situation.

Courtesy of Kassy Stuart

The usual feelings surrounding the birth of a new baby were shattered bit by bit with each new thing she said. She told me they thought he had a cataract in his right eye, a cleft palate, and a murmur in his heart. Those things along with his size and the amount of fluid I had, they needed to search for a diagnosis, or a syndrome. I peered in at him and thought, somehow they were wrong, somehow this was just a fluke and he just needed to grow. My emotions were out of control and I was trying so hard to stand strong but I felt like I was going to pass out. She then asked if I would like to hold him. Of course I did! I sat in that chair incredibly scared of what was to come, but to me, even past all of the wires and beeping, he was mine and he was beautiful.

Courtesy of Kassy Stuart
Courtesy of Kassy Stuart

The first few days while they searched for what exactly he had are still a giant blur to me. I would get my kids situated at home while my husband ran to the NICU and then he would swap me out. I would sit for hours and hold him, cry and search on Google. All syndromes are big, bad and scary, and it isn’t something you should be trying to wrap your head around while you are newly postpartum. Day 5 of life, which also happened to be Halloween, we were given his diagnosis.

Courtesy of Kassy Stuart

I arrived at the NICU around 10 a.m. I had come in an hour later than usual to watch my daughter’s Halloween parade at school. The doctor walked by Kenai’s room, poked his head in and said, ‘You going to be able to stick around awhile? We received Kenai’s diagnosis from the University of Utah. The geneticist would like to come by and break it down for you.’ I nervously smiled and told him I planned to stay. I sat in silence, nervous silence. I stared at my perfect, tiny baby in my arms and wondered what unseen road lie ahead. My heart would race and then I would cry, rock him and repeat those feelings and emotions. I waited there, wanting the geneticist to walk through the doors, but also hoping she would never come and that this was all one big misunderstanding. I didn’t even dare get up to use the restroom out of fear of missing her. By 2:00 p.m. she still had not called or come by. I told the staff I was running home to get my kiddos ready for Halloween, but if she came soon to call and I’d run right back over.

Courtesy of Kassy Stuart

I drove home in silence. After arriving home, of course I received a phone call from the geneticist. ‘I’m sorry I was unable to meet up with you today.’ I told her I’d be back in a few hours and she said, ‘Well if you would just grab a paper to jot down a few things, let’s do that for now, and then I’ll try to meet up with you next week.’ Kenai was diagnosed on a Friday.

I sat on the line stunned but said, ‘Ok, I can do that.’ She shared the information quickly and very matter of fact. It was a cold conversation and I sat alone in the kitchen trying to wrap my head around the words she spoke. She said, ‘There is very little information on this condition, only 34 similar cases ever on record, so I’m limited on what I have found.’ She told me he would more than likely be small, but that was the only for sure thing she felt she knew. I still have that green Post-it note, not even filled up, because the information was so limited.

Courtesy of Kassy Stuart

When she finished with her little info, she said, ‘I will continue to search for you and be in touch next week, have a great weekend.’ I stood alone in the kitchen staring at the note, in a fog. I set down my phone and the paper and slowly walked upstairs to where my husband was with our sleeping toddler. I tried to relay the information to him as best I could. I looked into his eyes but felt immense sadness. At the time I felt at fault and apologized. My husband got up and told me to stop, gave me a huge hug and we both sat in silence, embracing each other and gearing up for whatever lay ahead.

Kenai was born with something so rare there is no actual name for his condition. He is one of 34 other ever reported cases that are similar, but not exact to his. He is as rare as they come. He was born missing over 130 genes on his 7th chromosome. It is not something his dad or I carry. On the day of his diagnosis he was not doing incredibly well and weighed in at just 3lbs 3oz. I remember peering in at him and feeling a heavy weight over me. You never ever want to watch your child suffer. Knowing what that life would look like almost ate me alive. I also didn’t know who to turn to, I didn’t want anyone outside of the hospital to know because I wanted people to be excited for us and our new baby. I didn’t want sorrow or pity. So instead I sat in silence, Googled and feared the worst. It was brutal.

Courtesy of Kassy Stuart

My husband had to fly out of state for work about 3 weeks later. Kenai was still in the NICU and he was doing ok at the time. Soon after his daddy left, he took a turn though. He was being bagged multiple times a day and things were very scary. I was trying to keep a brave face for myself and my 3 kids at home. It was found that Kenai did not just have a murmur, or a PDA as they thought, which is quite common in early babies, but he would need open heart surgery, another hard blow. About two weeks later he had a repeat echo. He was doing great that day and it felt really promising. But a few hours later the doctor called. ‘You need to come back,’ he said. ‘Kenai’s heart does not look well and he needs immediate attention. We are prepping him for life flight.’ I got off the phone and crumbled, literally could not catch my breath and fell to the floor. I called my husband who was away working in Hawaii. I wanted him so badly there with me, I didn’t know how I would do this on my own. I loaded my newly 2-year-old little girl in the car and headed to each of my oldest kid’s schools. Having to break the news to them was heartbreaking. The words ‘life flight’ are scary words and not ones to easily sugar coat. We all walked into the NICU and kissed our baby as long as we could before he left the hospital with the life flight team and flew 5 hours away from me to children’s hospital. My husband arrived the next morning and we all drove up north.

Courtesy of Kassy Stuart
Courtesy of Kassy Stuart

Kenai had his PDA shut in the cath lab which thankfully bought us time before his open heart surgery. His total time in the NICU was 9 weeks, which felt like a lifetime while we were in the throes of it all. At 11 months old Kenai had his first open heart surgery. It was not until that day that the full set of his congenital heart disease were known. He had PDA, VSD, ASD, Pulmonary stenosis and ARCAPA. Unfortunately his conduction system was severed in surgery and his is now 100% pacemaker dependent.

Courtesy of Kassy Stuart
Courtesy of Kassy Stuart
Courtesy of Kassy Stuart

Kenai is just over 2 years old now and is thriving in his own way. We were told by many to not expect much as far as quality of life. We were told he may never smile, turn to his name, try to communicate, feed by mouth and a slew of other things. They could not have been more wrong about our warrior. He also is pushed to keep moving by his sisters. He has his older sister who is his protector in every way, and a very unplanned surprise baby sister 13 months younger than him who pushes him to keep going. I was in utter shock when I became pregnant with her while Kenai was just out of the NICU still hooked up to multiple machines, but I now know her timing was perfect. He is loved beyond measure and has two little protectors on either side of him for now until the end of time.

Courtesy of Kassy Stuart
Courtesy of Kassy Stuart
Courtesy of Kassy Stuart

Looking back on our life before and after Kenai, I know we have hit the jackpot. Even though our lives will never be the same, our lives will never be the same and that sentence holds more value than I could fully explain. Our world has been hit with a giant magnitude and force unlike anything I have ever felt before. He is a constant positive light and watching him overcome odds with a continuous happy demeanor pushes us all to be better versions of ourselves, every single day.”

Courtesy of Kassy Stuart
Courtesy of Kassy Stuart

This is an exclusive story to Love What Matters. For permission to use, email Exclusive@LoveWhatMatters.com.

This story was submitted to Love What Matters by Kassy Stuart of Utah. You can follow their journey on InstagramDo you have a similar experience? We’d love to hear your journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.

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