Feel free to either email me with questions or join the message board. We have a great group of ladies on there (and one father!!) who are all going thru what you are.

Links to both are on the laryngeal cleft page of the blog.

Did the ent diagnosis him with a cleft by rigid laryngoscopy done under anesthesia? Or just by him failing his swallow study? Because other things than just the cleft can cause aspiration. And what kind of surgeon are you going to see? Usually it’s the ent that repairs the cleft. Just wondering these things as it’s not clear from your comment above.

Have a wonderful day and look forward to hearing from you again.
Tracey

I’m glad that Hailey is doing somewhat better since starting feeding therapy. That can do wonders and is enough for some kids with type 1 clefts. Just not enough for others. Jen was never even given the opportunity to try it. By the time we got her to Boston they said it was too late for her to make much benefit.

I wish you guys luck with her surgery. It was hard to have patience with waiting after it. But when that day of throwing the thickener away finally came we were so happy. (though she does still cough with liquids more than I’d like….)

In the meantime there are some ways she can have ice cream and popscicles like her sissies. I can share a recipe with you if you’d like. Just email me or comment again here. I probably should just do a post on it huh!
Tracey

Hailey is my adopted daughter who first came to live with me in August 2007 at the age of 13 1/2 months. She was thriving, but had a diagnosis of “baby asthma” and her breathing was terrible! She wheezed and would cough and sputter every time she drank milk or water from her sippy cup. I took her immediately to my family physician who helped to clear her lungs with albuterol and oral steroids. We then took her to a pulmonologist who ordered a swallow study. On October 6, 2007 Hailey failed this test completely, showing penetration and silent aspiration on everything from thin liquid to cracker.
That day, at age 15 months, she was taken off of ALL oral feeds and had an NG tube placed. Oh, how she missed food!! And oh, how I cried!! After two months of testing (endoscopy, MRI, testing for reflux) she had a G tube placed and also a reduction of a very large umbilical hernia. A Fundo was considered, but her reflux appeared minor so it was not performed. She then started feeding therapy which she adored!! Her desire was to eat! With hard work in therapy and a direct answer to her very first prayer, “Dear Jesus, eat. Amen” Hailey was able to resume eating just 4 months after her diagnosis, but only foods that were honey thick or thicker. In April 2008 Hailey had repair on her heart for Patent Ductus Arteriosis. Although Hailey had made rapid progress on her eating right after diagnosis, the last year and a half showed no progress with her primary swallow. I often asked for her to see an ENT but was told repeatedly that she would probably outgrow her condition. Then in June 2009 I found the site about Jenny while searchng for info on dysphagia. I literally got goosebumps as the similarities to Hailey were so striking! I had a chance to share what I found about laryngeal cleft to Hailey’s speech pathologist in June,2009 only to learn that she had been writing in her reports since October, 2008 that Hailey should see a pediatric ENT to have testing for a laryngeal cleft. (That same day I met with Hailey’s gastroenterologist who told me point blank “Hailey does not have laryngeal cleft.”) The speech pathologist worked on getting the proper referrals and in August 2009 we took Hailey (now 3 years old) to Dr. Mark Boseley, MD a Lt. Colonel in the Air Force who is stationed at McChord air force base here in Washington State. He practices on the side at Mary Bridge Children’s Hospital in Tacoma, WA because he believes in helping as many children with throat abnormalities as possible. He agreed that Hailey’s medical history, including aspiration pneumonias, and her swallow studies warranted larynoscopy testing. As Hailey also had abnormally large tonsils, it was agreed for him to remove them and her adenoids at the same time. Surgery took place on August 24, 2009 and indeed a type 1 laryngeal cleft was found. We are now awaiting a surgery date which will be within the next few weeks to repair the cleft.
We eagerly await this surgery knowing it will give Hailey the chance to finally eat “juicy” foods and no longer be so sad when her older sisters eat watermellon and other such delightful looking foods.
So, once again THANK YOU for sharing Jenny’s story!!! It gave me great information on a condition I had never heard of and the catalist to make sure she saw a qualified ENT that could diagnose her and make a surgical correction. (by the way, we learned today from Dr. Boseley that he did a residency there in Boston.)
I look forward to hearing from you, and will surely make another posting after Hailey’s surgery.

Sincerely,
Julie Evensen
Aberdeen, Washington

My son, Jack, was diagnosed at birth with Down Syndrome. He was really healthy until he was almost 3 months old, in June 2009. I had heard him making alot of wheezing noises – what we learned to be stridor. After lots of work to get him breastfeeding, we had a ton of trouble getting him to take the bottle when I had to go back to work. It took half a dozen nipples, but we eventually got him taking the bottle – he would dribble at least 1/3 of every bottle but he was taking them. And he had always been a “noisy” eater – with lots of gurgling etc. Jack did not spit up often, but when he did it was always the same – he would have a coughing attack, followed by projectile vomiting.

The pediatric ENT diagnosed him quickly with laryngomalacia and recommended we work with speech therapists. We were lucky to get a swallow study that showed Jack was aspirating everything and he was admitted and put on an NG tube. All his feedings and meds were through the NG for months. We had a bronchoscopy in early August and learned he had significant swelling from reflux and also had a type 1 laryngeal cleft. Lucky him to be in such a small minority! The ENT did a supraglottoplasty to ease up his tight vocal chords – and we have not heard the stridor since!

We now have him on honey thickened formula and cereal/babyfood and are working closely with speech therapy at Children’s Memorial in Chicago. We started on a slow flow nipple with the honey – you can imagine how long that took! (We are now up to a fast flow, but he only takes 3 oz or so at a time before pooping out.) It has been a very long 3 months with the NG tube, and we got to the point where his feedings were taking 1.5 hours! With a 3 year old in the house, that is unbearably long. This week we have our next swallow study and i am so hopeful that he will do well so we can at least move him to a nectar. He has some really minor heart problems, and poissible oxygen saturation issues, so he gets really tired eating and we are not sure he has the stamina to take enough calories to allow him to get off the tube.

The ENT said that 40-50% of the time, kids with laryngeal clefts “grow out of it” so he is hopeful that Jack could avoid surgery. After reading your story, I am not as convinced. I just pray that we can get rid of the tube soon and take it from there. It makes it so hard to be mobile with him but we are working with his schedule to make life easier. Thank God for my unbelieveable nanny!

I look forward to hearing how Jennifer is doing and watching her progress. I will let you know how Jack does…

keep in touch!
Megan

I was just rereading your post. I am wondering how your son’s surgery went and how the feeds have gone. I hope that all went well. Did you end up stopping breastfeeding?

My daughter is nine months old. She was diagnosed with a laryngeal cleft stage 1 when she was 2 1/2 weeks old after having a swallow study and a bronchoscopy. At the time of diagnosis, she had an ng feeding tube put in. I pumped around the clock for 4 months and gave her breast milk through the feeding tube. At each feed we gave her a pacifier so that she wouldn’t lose the sucking reflex. She had the corrective surgery right before she turned three months old and the feeding tube stayed in for another month until we had another swallow study. We were given the OK to nurse or bottle feed then. I have noticed lately that there is a difference between the sounds she makes when she is eating baby food and that of when she is drinking from a sippy cup or bottle. She makes coughing/choking noises from liquids and not with solids. I am wondering if thickening her liquids will help. She is scheduled for another swallow study next week to see what is happening.

The ENT who performed the surgery left the practice, so we have been seeing another doctor from the practice. He told me that he normally does not perform the surgery until the child is one year of age.

I hope that all is well with your son. I would love to hear from you or any of the other people on here who have dealt with thickening liquids and how successful the corrective surgery was.

Best Regards,

Chris