[NFOSD note – Jaime shares the 5 most helpful tips for families experiencing a similar experience at the bottom of this article.]
The NFOSD shared my son’s story with you recently; I thought it might be helpful to others if I shared my story. My beautiful, energetic, happy, 2 year old baby boy, the joy of our life, has severe dysphagia. I know there are lots of other mothers out there just like me. We are not alone! Raising the awareness of swallowing disorders is a small step that can help millions.
Eli was born on August 31st 2010. He was finally here. He was a beautiful and healthy bundle of joy, warmth, and wonder. We left the hospital assuming all went as planned and that all was well.
Our journey begins
Babies don’t come with a do it yourself guide. Even though we have one other son and my husband another, every baby is different. When Eli ate he would almost always cough and choke. We felt something was wrong and took Eli in for an assessment a few weeks after he was born; he was diagnosed with severe dysphagia. I had never even heard of dysphagia. My husband, John, and I were in shock. We’d gone from a healthy newborn who we loved deeply to a son with a medical condition we’d never heard of. Was it life threatening, was he the only one, how did this happen, what could we do? There were so many questions and these are just some of the thoughts we felt as we listened to our physician. The sadness you feel when you learn something is wrong with your child is indescribable.
What would we do for our children?
The simple answer, we’d do anything and everything! As a parent, your most important priority is your child’s health and well-being. Feeding time before we discovered his dysphagia was difficult and lengthy. Newborns eat often as it is but since Eli would choke and then stop eating we had to feed him frequent short feedings. Once we started thickening his feeds it made eating much easier but also meant I couldn’t breastfeed him normally. If I wanted to continue breastfeeding I would have to pump 100% so we could then thicken it before feeding Eli. At the same time he was also having issues with food allergies and was intolerant to dairy and soy. I was not able to eat anything with dairy or soy and had to pump every few hours. Talk about sacrifice!! At around 4 months old I finally decided to put him on hypo-allergenic formula. Between the stresses of his illness, pumping at all times, and being unable to eat so many things I loved, I felt it would be healthier mentally for me which would in turn be better for Eli.
Doctor appointments became a regular activity. We frequented gastroenterology, pulmonary, ear nose throat, rehabilitation, and our pediatrician’s office. My husband and I both work full time which made all the doctor visits even harder. For awhile I felt like we lived at Phoenix Children’s Hospital. Every visit was crucial in keeping Eli healthy and learning more about dysphagia.
At his very first modified barium swallow study he was put on nectar consistency. It was also discovered he had acid reflux. At around 6 months old he had another swallow test and was not getting any better. He actually ended up having to go to an even thicker consistency, honey.
There was no explanation as to why he appeared to be getting worse. It was decided to do an endoscopy, bronchoscopy, and laryngoscopy to see if there was something causing his dysphagia. We hated for Eli to have to be put under and go through this, but we needed to know if there was a bigger problem. Having to stay back as your little baby is wheeled off to surgery is something no parent should have to go through.
It was discovered in his scopes that he did have mild laryngomalacia and a mildly deep interarytenoid notch. Both of these things did not appear to be severe enough to be causing his swallowing problem however. It was decided there was no physical abnormality causing his problem and that they hoped with time his swallowing muscles would mature and he would outgrow this. On one hand, this was good news; yet I hoped to find some sort of answer as to why he had this problem. They believed he would eventually outgrow this, which was really the best news possible.
As Eli grew and started eating things other than just formula, it meant certain foods had to be avoided. There are a lot of foods out there you don’t even think about that are solid but cause risk of aspiration in someone with dysphagia. That means no popsicles (unless I made them myself and mix in thickening gel before I freeze them), no ice cream, fruits that are juicy or tomatoes, no ice in drinks that could water it down, no lollipops since they go down with your saliva, and even medicine must be thickened before giving it to him. You must be on guard about everything you give him to be sure it’s going to be safe or can be thickened.
At around a year old he had another swallow test which got us to double honey. We had been told he should grow out of this and did not understand why he was regressing. I broke down in tears in the hospital trying to understand why this was happening and what it meant. We were very worried that if he kept regressing he would have to eventually be tube fed.
Eli was recommended as a candidate for VitalStim therapy which has turned out to be a wonderful blessing. It’s not easy on us or Eli but has helped his progress tremendously to the point of being back to a nectar consistency. He has had approximately 50 sessions. He goes to an hour long session four days a week at Phoenix Children’s Hospital. Four electrodes are placed on his neck at the exact spot for the muscles used to swallow. An electrical current goes through the electrodes and makes the muscles contract into a swallow. Over time, these hard forced swallows strengthen the swallowing muscles. It is not a pleasant therapy. He then must swallow drinks of the current thickened liquid he is on to retrain the muscles to work with that consistency.
VitalStim has been our greatest answer to prayers. It is very time consuming and expensive though and is a big commitment to make. Between driving time and actual therapy it’s about 8 hours a week and each session is VERY expensive. Insurance covers a limited amount of visits annually which means we can only make so much progress each year from the therapy.
One of the best things for me personally at therapy was to find this hidden group of others with similar disorders. Until then I knew others existed but had never met anyone else with dysphagia. As I spoke to other moms in the waiting room I heard more and more similar stories to mine. It made such a big impact emotionally for me to find other moms who knew what I was going through! When you try to tell your friends and family about what you are going through it’s really hard for them to fully comprehend what it’s like to live with this 24/7.
Eli’s current state
Eli started on nectar, went to honey, then double honey and has now returned to nectar. He has made great progress. We owe many thanks to VitalStim and all the hard work his many doctors have put into helping him. He also outgrew his dairy and soy allergies and was just taken off his acid reflux medicine successfully.
These past 2 years and 3 months have been filled with worry, uncertainty, and confusion. Eli has been a trooper through all his tests and therapy and sucks down the thickened liquids without protest. Luckily, Eli is still young enough he doesn’t realize he is different and basically has always had thickened drinks, so he is used to it. In this way I think it makes the situation easier for Eli.
Dysphagia affects the young and old, and ranges from very little thickening to so severe that tube feeding is required. We were very lucky Eli never had to be tube fed, he got very close. I take things day by day and hope for the best. I cling to the hope that one day he will be able to drink and eat anything he wants without thickener. Now that we are seeing progress with VitalStim, this is becoming more of a reality than a dream.
The five most helpful tips for other families
- Knowing there are other families who are experiencing similar challenges. If you can’t find anyone to talk to, consider asking your doctor if they know anyone under similar circumstances who might want to talk. There are dysphagia groups out there, try looking on Facebook.
- The support (emotional and financial) we received from Eli’s fundraiser website. As a means to help pay our growing medical bills, I started a fundraiser using www.youcaring.com and it has been a tremendous help. It also gave others a way to help and express their feelings and prayers. Click here for Eli’s fundraising page.
- NFOSD support. Contacting them was one of the best things I did. Ed and everyone on the board have been great in providing information and reaffirming everything we have done so far to help Eli. Each one of them has their own unique and remarkable story.
- Explore VitalStim. If you haven’t heard of VitalStim, I strongly encourage you to ask your doctor about it. It can really help if you are a candidate for it. I hate to think where we would be right now without it. www.vitalstim.com
- Fight! You are your child’s most important advocate and have to be ready to fight for them. If a doctor isn’t listening to you, find another doctor. Do research and learn as much as you can. The more you know, the better you are equipped to help your child.
The photos for this story were provided by Ace Fanning. After learning of Eli’s dysphagia and the impact of this disorder on Eli’s entire family he offered to conduct a free photo shoot to help the Bailey’s and increase dysphagia awareness. Ace can be reached at www.acefanning.com. Here are a few more photos of Eli with his brother Mason. ENJOY!