Laryngomalacia and Oropharyngeal Dysphagia: Ransom’s Story of Hope

We are excited to share the Meade family’s story with you. Mary Brantley is one of our writers, and her perspective, hope, and encouragement are rooted in God’s faithfulness through the ups and downs of their story. We are thankful for this family and the way that they hold onto and spread hope.

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Our story began with loss. Nate and I lost our second baby in the fall of 2016. I went through many weeks of pain after our miscarriage, both physical and emotional. I couldn't imagine why the Lord would take away this life, but I knew I should trust Him: “The Lord gave, and the Lord has taken away; blessed be the name of the Lord” (Job 1:21b).

A few months later, we were overjoyed to find out that we were expecting again and went in for our first ultrasound. Our jaws dropped when the nurse stated, “Oh, there are two.” At that moment, I thought back to the story of Job in the Bible. The Lord allowed him to be tested by Satan, who took everything from him. At the end of the story, God gave Job double what he lost. This is not the formula for loss. In fact I think it rarely is. God certainly didn’t owe me a thing, but the extravagant kindness of the Lord could not be missed.

We elected to have a C-section at 37 weeks. The twins were even larger than our perinatologist predicted: Hope came first weighing in at 6.5 pounds, and Ransom was a whopping 7 pounds. I knew I felt heavy in those last days, but I had no idea I was carrying nearly 14 pounds of babies!

Making it to full term with the twins and hearing they were a healthy weight was a relief. I had spent much of my pregnancy preparing my heart for all kinds of worst case scenarios, knowing that it might be difficult for my body to provide all these two babies needed. But here they were! They were finally in my arms — healthy by my estimation.

An unexpected turn

The first night, Nate walked the twins to the nursery for their first bath. I stayed back in my room, still recovering from surgery. While visiting with friends, a nurse burst through our door exclaiming, “It’s bad! It’s really really bad!” She was disheveled, out of breath, and glistening with perspiration. She said Ransom went into respiratory distress during his bath. Apparently the respiratory team rushed in and sucked out the remaining fluid from his airway.

I quickly dismissed her panic thinking she was being dramatic. Didn’t she know I had just delivered TWO healthy babies? We did not have anything to worry about!

The following day, I joined her in concern when I saw Ransom turn blue right before my eyes. The nurses whisked him away and took him to the NICU where the respiratory team could evaluate him. After several days in the NICU, the doctors determined that his distress was likely due to some remaining fluid in his lungs and discharged him from the hospital.

I was not convinced their assessment was correct. Ransom sounded awful. He wheezed and whistled with every breath. It became increasingly difficult to wake him for feedings. We took him back to our pediatrician to get a referral for an Ear, Nose, and Throat Doctor (ENT).

The ENT put a camera down Ransom’s airway to examine what exactly was causing all the distress and noise. That day I learned the word “laryngomalacia”: a disorder in which the skin of the larynx is floppy and excessive. The doctor told us that if we saw Ransom turn blue again, Ransom would need to immediately have surgery on his airway to cut away that excess skin.

Complications with laryngomalacia

Almost as soon as we got home from the appointment, Ransom turned blue. I spotted him across the room choking and sputtering. I picked him up and his color returned. We went straight to the emergency room, and the ENT scheduled the surgery for the following morning. At 10 days old, I handed my baby off to a surgeon, not knowing what he would be like when he came out of surgery, but we were hopeful it would be a quick fix.

The surgery seemed to work well! His whistling disappeared, and he was eating well and happy. To our disappointment, Ransom’s easy breathing only lasted for a few days, and we went back to his ENT for an explanation. She informed us that his airway tissues healed back to their previous condition. She would have to repeat the surgery.

For me, the hardest part of this whole ordeal was feeling separated from my family. My mother had the forethought to take family medical leave from her job when the twins were born. Thankfully, she was able to care for our oldest son, Henderson, who was just two and a half at the time. Hope was not allowed in the PICU due to hospital policy, so Nate and I spent all of this time separated even though we were in the same building. The hospital graciously gave me a little room to sleep in and take care of Hope. It was extremely difficult to adjust to the fact that I couldn’t be there for all of my children at the same time.

Nate came to grab bottles from me and fed them to Ransom himself. I believe that Nate feeding Ransom during those times forged a bond between them that will last a lifetime. I am so thankful that the Lord gave me a nurturing and gentle husband, someone up for the challenge of caring for a medically fragile baby.

Ransom did well after this second surgery, and his doctor released him to go home. Again, we had several days at home with normal breathing and eating from Ransom….And then Ransom’s respiratory distress returned. We returned to the emergency room concerned for the life of our child. The doctors determined that another surgery would not help Ransom — it would simply create more scar tissue and more breathing issues. During this hospital visit, Ransom went through a sleep study revealing he had significant obstructive and central sleep apnea. We went home with an oxygen tank and a monitor.

Oropharyngeal dysphagia and feeding tubes

At three months old, weekly weigh-ins determined that Ransom was no longer growing well and “failure to thrive” appeared on his chart. He was using all of his energy to breathe. At this point, he was also diagnosed with oropharyngeal dysphagia. This meant that it was unsafe for him to swallow without aspirating milk into his lungs. The doctors recommended Ransom begin using a feeding tube. His first tube was an NG tube, a feeding tube that goes from his nose to his stomach. Praise God, the feeding tube helped him begin to put on some pounds!

The first few months of Ransom’s life felt a bit like the children’s book If You Give a Mouse a Cookie, for it seemed that each medical intervention we added created a need for another. Ransom’s GI system did not tolerate his feeding tube, and we were advised to try a new type of tube, called an NJ tube. This now meant that he was on a continuous drip of formula. He only had a few minutes each day where he was not attached to medical equipment. Usually, this was bath time.

We also added more doctors to the rotation. A pulmonologist diagnosed Ransom with asthma, and we began using two different types of inhaled medications daily. We began seeing a physiatrist, a developmental pediatrician, a nutritionist, and a neurologist, just to name a few.

The long fight for hope

By the time Ransom was six months old, it was apparent he had a global developmental delay. His doctors recommended an MRI. During this assessment, a doctor noted that Ransom had immature white matter and at some point had had a small hemorrhage in his brain. Ransom’s team of specialists still disagree about whether or not Ransom truly has cerebral palsy due to this hemorrhage. Nate and I now believe this is probably the most appropriate diagnosis based on his enduring symptoms.

We trudged through each day taking care of Ransom. We had a strict schedule, rarely left the house, and I had my excel spreadsheet to track his feedings and medication. We went from trudging along to being carried by our Savior when we discovered Hope had the same airway and swallowing disorder. At first we thought her case was mild enough to not require any intervention, but it became apparent that she also needed a feeding tube as well.

The following weeks we were back and forth to the hospital to have Ransom’s NJ tube replaced, Hope was not tolerating her tube well, and the twins were constantly sick. If the Lord had not been my help, I know I would have lost my mind.

The Lord sent people at the just the right time to pray with us and provide for us. He sent friends and family who were willing to learn how to operate the medical equipment while we stepped out for a breather. Our God of Comfort certainly used the people around us to comfort us.

During a consultation with the Aerodigestive Clinic At Children’s Healthcare of Atlanta, a doctor informed us that Ransom would likely require a feeding tube for a year or more so it would be wise to go ahead and move his tube from his nose to his belly. He went through the surgery to place the GJ tube, and he spent the next weeks recovering. We so enjoyed being able to see Ransom’s face free from tape!

After a few months with a tube, Hope was able to eat orally again. At the same time, Ransom’s GJ tube was replaced with a G tube. This was a HUGE deal because he would have more time disconnected from the tube — time he needed to move his body and work on his motor skill development. Ransom used this G tube for another year, until he got the all clear to remove the tube completely. What a day that was! It was the perfect present for his second birthday.

Overcoming another round of obstacles

In preparation for speech therapy, an audiologist discovered that Ransom could not hear properly due to some fluid in his ears. Soon after, Ransom’s ENT placed tubes in his ears. He recovered quickly from this surgery and began weekly speech therapy sessions. We were overjoyed to see Ransom begin moving to the beat of music and babbling more.

An orthotist fit Ransom with AFO’s, braces for his feet that went up to his knees. Ransom refused to bear weight on his feet, and these devices would give him the stability he needed to learn. Ransom later traded these braces for SMO’s, a shorter brace that supported his foot and ankle. Once he became more confident, Nate made Ransom a gait trainer (basically a walker) and Ransom exponentially grew in confidence. Ransom surprised us all when he nonchalantly walked across the room without help at 28 months old.

Ransom is now three and a half years old. He is such a charming little boy. His smile is infectious, and he has an adorable sense of humor. He eats every food put in front of him and has a healthy appetite. His favorite word is “snack.” He walks. He runs. He drinks thickened water to manage his dysphagia, and he is learning to talk more and more each day. I am amazed at all the Lord has done in growing Ransom and helping him overcome his medical challenges. The Lord is so merciful and kind.

We are in the process of applying to various specialized preschools to get Ransom all the help we can give in these early, foundational years. Ransom is also going through a variety of evaluations in the coming weeks. We covet your prayers for wisdom and provision as we make some important decisions.

Looking ahead

As we wait to see the end of our story, we have admittedly been shaky and anxious. The Lord lovingly reminds us to continue trusting his plan. He has taught us that we are not in control, but there is peace in placing our children in their Creator’s hands. It is such a relief to release that white knuckled control over them… to say, “Here, Lord...this child is first yours. His every breath comes from your hand. I will trust you with his tomorrow.”

In addition, I can honestly say I am thankful for all we have gone through these past few years. I know that the Lord uses every ounce of discomfort, heartache, and bone-tired fatigue to draw us closer, to develop our character, and to prepare us for eternity. The Lord has also used our experience to develop a desire to encourage families who are also facing an unexpected diagnosis. All in all, I think my greatest takeaway from these few years is this: Perfect health is not the goal — reliance on our Savior is. Our hope cannot be in our children’s medical chart. It must be in Jesus Christ, our salvation.

“Rejoice in hope, be patient in tribulation, be constant in prayer.”
- Romans 12:12

"Those who dive in the sea of affliction bring up rare pearls."
- Charles Spurgeon

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