‘He has a growth.’ No one came to help. We had to watch a YouTube video on how to feed our newborn.’: Mom shares son’s journey with cleft palate, ‘We do it for our babies’

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“We had waited 5 years for a positive pregnancy test. 5 years of negative tests, 5 years of endless tears, 5 years of lost hope.

April 5, 2011, I got my positive pregnancy test, the two lines that changed my life forever. My pregnancy was almost too perfect. No morning sickness, no weird cravings. I had tons of energy, I felt like I was in heaven! Every ultrasound, we’d hold our breath and wait for that perfect sound of our son’s heartbeat. I think every parent does this. Every appointment, we were thrilled with how perfect he was growing, how we were getting closer and closer to a ‘safe point.’

At our 20-week target ultrasound, they checked everything. They check their heart, lungs, organs, brain, arms, legs, you name it. It is a long ultrasound and I was enjoying every second of it. We were loving looking at these 3D images of his beautiful little feet, his beautiful skinny arms, and legs, his perfect little round head. We were so in love already! They kept going back to his face and then they’d move around a bit. They did that a few times. She finally turned to me and said, ‘Your baby has a cleft lip.’

Courtesy of Kayla Wescott

I knew what it was. I was familiar with the term, due to my grandfather having a cleft lip. I knew it meant surgery. I knew it meant my baby would have to have surgery when he was tiny. That was my first thought. I couldn’t imagine changing this perfect face I’d never even seen in person.

She ended the ultrasound and asked my family to wait for me in the lobby while she went over some further information with me, which seemed odd. It seemed like my family should be with me for this crucial information. She took me into an office and started handing me pamphlets, names, numbers, referrals for specialists. I couldn’t even think straight. I was scared, I felt like I wasn’t retaining any information she was giving me. I sobbed because I didn’t know how I was possibly capable of all of this. She informed me I’d need to meet with a specialist called a Perinatologist to confirm my son didn’t have syndromes associated with his cleft lip and also to try to confirm he also had a cleft palate. I took all my paperwork and met back with my family in the lobby. I think we were all feeling a little shocked and scared. This was the start of this incredible journey with our son, Landyn.

We went to our appointments, we did bloodwork and screenings, we did weekly stress tests, we jumped through all the hoops to get to that 40-week mark and to get to hold our perfect baby. He indeed had a cleft lip, along with a cleft palate. Otherwise, he had no other identifying markers for syndromes or genetic disorders.

They scheduled me for induction at 39 weeks so they could have the NICU on standby just in case he had breathing problems. I was in pain-free, blissful labor for 8 hours before the decision was made for me to have a c-section. Landyn wasn’t dealing well with the induction meds and his heart rate kept dropping.

At 3:57 p.m. on December 13, 2011, our miracle baby entered this world and sent our lives into a beautiful, chaotic whirlwind. Immediately after birth, we were told the lactation team would be in to help me learn to breastfeed our baby. About 3 hours after his birth, nobody had come in. We attempted feeding him on our own and he was obviously not able to suck, so it wasn’t working and he was getting frustrated. We asked the nurses for a bottle, which was a specialty bottle. Our nurse opened our door, dropped the bottle on the counter, and walked out. We had to watch a YouTube video on how to feed our newborn baby. Come to find out, the bottle they brought in was for a micro-preemie. It gave him a massive blister on the little bit of palate he had. It was awful. He was in pain, he was hungry, and we didn’t seem to know what was next.

Courtesy of Kayla Wescott

After 2 days in the hospital and never meeting with the lactation team, we went home. We had picked a pediatrician that was in our family and was trusted. We took our 3-day-old in to see him and have an initial checkup.

Landyn has lost over a pound in 3 days! He was starving. Our pediatrician was shocked at what we’d been through and how the hospital hadn’t helped us learn how to feed our baby. He immediately started making phone calls to the craniofacial team at Primary Children’s Medical Center in Salt Lake City, Utah. He came back into the exam room and asked us to get in our car and make the drive to meet with the feeding team. He had handled everything. We got in our car with our 3-day-old, me with a fresh c section, and my terrified husband, and we called my parents and begged them to meet us at the hospital, which was about 45 miles away. They got right in the car and told us they’d see us there.

Courtesy of Kayla Wescott
Courtesy of Kayla Wescott

We headed there and cried the entire way. We got to the Children’s Hospital and were greeted by the craniofacial team immediately. They took us into a nice room, introduced themselves, and gushed over Landyn. They brought out a different kind of bottle called a Mead Johnson bottle and a Pigeon nipple. They made him some nice warm formula and handed us the bottle. They explained the bottle was a positive flow nipple so we had to flip the bottle, squeeze the nipple, and formula would fill the nipple. We gave Landyn the bottle and he drank 6 ounces! Our little 6 pounds, 2 ounces baby, guzzled a six-ounce bottle! It was amazing! His belly was full, and he was content!

After we had a fed baby, we started going over details about surgeries, surgeons, specific teams, and timelines, all the nitty-gritty. We were feeling hopeful about this new team on our side. They sent us home with multiple expensive nipples and bottles, tons of good information about Landyn and his cleft, and they urged us to do research and pick a cleft team. We went home feeling like we were ready to take on the world.

Courtesy of Kayla Wescott

The next few weeks flew by. Landyn gained weight like a champ, and his eating problems seemed to dissolve away. At one-month-old, Landyn was fitted for a device called a NAM. It is something that brings together the lip and nose naturally before surgery. It was to be left on 24/7. They taught us how to put it in his cleft, and tape it to his face. For us, it was AWFUL. He bled, he screamed, he refused to eat. It was like going back to square one. We opted to do away with what felt like a torture device. I am never sorry about that decision. We were told it meant a much bigger scar and his cleft repair would be less appealing aesthetically. I never looked back.

Courtesy of Kayla Wescott

2 more months flew by and it was time for his first surgery. We had 14 people from our family at his first surgery. We had t-shirts made for each of us to show our support for our baby. I thought about running away and not having his cleft repaired, I thought about walking out of the hospital before they could start admitting us. It seemed impossible to change his beautiful, perfect face. But, ultimately, I went through with it for his sake.

I mourned for the first few days. I felt like they had changed my baby and he would never be the same again. I was so wrong! He smiled 3 days post-op. He healed faster than I could have ever imagined. He was happy, he was thriving, and we were thrilled. He had two more surgeries before his first birthday and did tremendous with each one. As time flew, and we had a toddler, and then a naughty child, the one thing we could never escape was severe double ear infections.

Courtesy of Kayla Wescott

His pediatrician was always on top of it. We always started antibiotics and eardrops. We did what we were supposed to do. He had tubes put in his ears and by age 4, was on his third set of tubes. Unfortunately, they weren’t working.

At age 5, at a random doctor’s appointment for yet another ear infection, our pediatrician told us he had a ‘growth’ in his ear. He gave me the medical name and told me to follow up with Landyn’s ear, nose, and throat doctor. I did what I always did and started my research to learn as much as possible about his cholesteatoma. I knew this meant more surgeries. I knew surgical intervention was the only way to remove these disastrous beasts. We saw his ENT and they determined we should get it removed before it spread and damaged hearing bones and middle ear structures.

In April of 2017, we went in for surgery to remove the cholesteatoma. The surgeon told us he was able to remove all of it, but Landyn’s hearing bones were destroyed and his hearing in that ear would be slim to none. We knew we could deal with it. We would deal with anything for our miracle baby.

Courtesy of Kayla Wescott
Courtesy of Kayla Wescott

We took Landyn in to be fitted for a hearing aid and were so excited for him to be able to hear out of both ears. As Landyn grew and we kept up with his annual appointments, we were told the cholesteatoma was back and extremely aggressive. It was filling his middle ear. We switched surgeons to someone who specializes in severe middle ear conditions.

In July of 2019, Landyn went in for a second surgery to remove the cholesteatoma again. The surgeon came out and informed us, ‘It appears the cholesteatoma had affected the tissues separating Landyn’s brain from his ear.’ He had to stop surgery so he didn’t end up with a spinal fluid leak. He said the next surgery would be with a neurosurgeon standing by in case they needed to do a craniotomy. We felt defeated. We were scared. We just wanted our son to have a break from all of this.

Courtesy of Kayla Wescott

We spent some time healing, reflecting, and researching. We allowed Landyn to have a break from surgeries for the remainder of 2019. Landyn had a sedated MRI in August of 2019 and we met with a Neurosurgeon in February of 2020 to go over the scans. The surgeon was confident there wasn’t a tear, and there wouldn’t be a spinal fluid leak but was onboard with our surgeon wanting to just be safe. We felt hopeful again and knew we’d have to face this head-on.

We scheduled surgery for March of 2020 and then the coronavirus happened. All elective surgeries at our hospital were canceled. We met with our doctor and he was confident it was okay to wait for a little while longer while the world settled down.

November 11, 2020, Landyn went in for his tenth surgery overall and his third on his left ear. He was in surgery for 3.5 hours. We were given multiple updates while in surgery. It had NOT gone near his brain. They did NOT need to do a craniotomy. However, it was so severe and had spread so badly they had to remove the entire inner ear. It is called a canal wall down mastoidectomy. He will have to have cleanings every 6 months for the rest of his life to prevent regrowth.

Courtesy of Kayla Wescott
Couresy of Kayla Wescott

Landyn is deaf in his left ear. His right ear now has a cholesteatoma growth that will have to be removed before it damages the hearing he does have. Due to the constant ear problems, we’ve had to put craniofacial surgeries on the back burner. Eventually, we will have to face those.

Landyn is coming up on his ninth birthday and has had a cleft lip repair, soft palate repair, and prosthesis put into his hard palate at 3 months old. He had his prosthesis removed at 11 months old. At 12 months old, he had his hard palate repaired. He almost coded from the swelling in his throat and he ended up with an infection that landed us back in the hospital for two days after the initial 2 days post-op. At 5 years old, he had four surgeries in one year. He had his tonsils and adenoids removed to help prevent sickness, and he had his sinuses scraped. The ENT wanted him tested for a form of cystic fibrosis because she had never seen such diseased sinuses. He has also had a revision done on his lip and nose to help him breathe out of his collapsed nostril.

Courtesy of Kayla Wescott

You’d think surgeries would get easier and less stressful, but they NEVER do. I have developed an irrational fear of anesthesia. His dad throws up every time Landyn is in the operating room. We sob, we get sick, and we pray for the best outcome possible. My parents, grandparents, aunts, uncles, cousins, and siblings are the most incredible support system we could have ever been blessed with. Landyn is loved beyond anything I’ve ever seen.

COVID-19 created some barriers for our family this time around and made it so our normal support system couldn’t be right by our side, but we fought through it. We did video calls, we took lots of pictures, and our family remained by our side virtually! We will make it through anything and everything together. We will always face these battles and challenges and will always remind Landyn of his incredible strength and resilience.

Landyn is already a proud advocate for the cleft community, and now for anyone who faces hearing loss. Landyn wants to learn American Sign Language and wants to help kids in hospitals feel less scared. Landyn always wants to know everything that is going on with him. He is passionate about learning about his medical conditions and is always willing to share his knowledge with anyone and everyone who will listen. He knows all of his surgeons and which surgeon works on what part of his body. He makes us so proud and I hope he advocates as he grows. I hope he spreads knowledge, awareness, and hope.

We couldn’t be more excited to share our story, to hopefully shed some light for anyone going through anything similar. There is a light at the end of the tunnel. Parenting is scary without facing these challenges. But we do it, we do it for our babies. I am an open book. I’d love to share my experiences with anyone who would like to reach out. I’ll cry with you, I’ll laugh with you, and I’ll stand by your side.

Parenting takes a village, and sometimes it’s a village full of strangers who have been through some of the same obstacles and understand the same fears and trials.”

Courtesy of Kayla Wescott
Courtesy of Kayla Wescott

This story was submitted to Love What Matters by Kayla Wescott from Utah. You can follow her journey on Facebook. Submit your own story  hereand be sure to  subscribe to our free email newsletter for our best stories, and  YouTube for our best videos.

Read more stories like this:

‘It took him nearly an hour and a half to finish a bottle. Milk would come out from his nose, his ears. EVERYWHERE.’: Boy’s cleft lip and palate ‘gave him a chance to know why he’s special from an early age’

‘Did you get kicked in the face by a horse?’ In that moment, I saw red.’: Woman shares cleft lip and palate surgeries to give other parents hope

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