Infant with Paralyzed Vocal Cords

My daughter was born with trachealarnygomalacia. Basically, she had a severe stridor and squeaked when she breathed. She also sounded like she was gasping, so much so that she was followed by a pulmonologist at first. They did laryngoscopies and it took awhile to get the proper diagnosis, she was probably 3 mos. by that time. One thing my pediatrician did was give her RSV shots to prevent her from contracting the RSV illness. That disease can be fatal, but especially so to preemies and babies with breathing issues. See a good ENT as soon as you can. I did end up staying home with her, and I'm so glad I did. It was tough, but she did end up more healthy because of it. I went back to work when she turned 1. A funny note, when I had her out at a store people would look around to see what the funny quail-sound was when I had her in her carseat/stroller covered up...I would just smile, heeheehee.
(She also ended up with reflux, so be watchful for that!) Email me for more if you'd like.
BTW, she just turned 6 and when she's horsing around she still "honks"...she just thinks it's funny now.

Thanks for the update. I remember reading your post when you first posted it. My son was born in 2008 too and your story tugged at my heart. I remember thinking how scary it must have been for you and how greatful I am to have two healthy kids. I'm glad to hear your daughter is ok. Thanks again for the update.

whew - a tough situation. I can understand the anxiety and concern you are feeling. I don't have experience with your daughter's condition but my daughter had some difficult issues when she was born. She was 6 weeks premature, and did not breastfeed well at all. She lost weight for the first three week of her life, and ended up in intensive care with pneumonia twice before she was 6 weeks old. She was on home oxygen for a couple months after that. I remember feeling how frail she was, and how scared I was for the future. She is now a strong, healthy, robust three-year-old. Considering she fit in the palm of my hand when she was born, she has made a huge turnaround. It just takes time.

It is hard to take things day by day when there is so much uncertainty. But this really is the best way. Wait and see how she responds, and if the condition reverses itself - sounds like that is a real strong possibility. If it does not, then you will need to decide how to handle it. Speaking as a person who REALLY likes to know what is happening, and how to handle it, I know how hard it is to let your worries go, and focus on one moment at a time. But when I can do this, my stress level drops dramatically, and I am much better able to deal with the challenge of the moment in the best possible way.

Something else that can be helpful is to get more information - check out the possibilities of Medicaid and other state coverage programs for your daughter. Ultimately you will have to decide about the day care and work issues, but not yet. Try not to add to your stress by considering too many possibilities, too far into the future. Focus on making the best decisions that need to be made right now, and let the rest go.

My heart is with you - all the best!

Warmly,

V.

Hi M.-I faced a situation very similar to yours. My daughter had laryngomalacia, an underdeveloped larynx, when she was born. I clearly remember the day I called my boss and said I can't come back to work because my baby's health depends on it. It was very difficult. I went uninsured and we really had to cut back on the budget for a year because of the choice. BUT--her health did improve and she got stronger as the time went by. We slowed down quite a bit for about a year and then big changes began to happen. She is now 2, very strong and such a character. I am incredibly happy I stayed home with her for the time I did. I wish you the best with your decision. Maybe you can ask for an extended maternity leave? Go back part time to keep the insurance? Babies are sometimes put here on this earth to make the rest of us get more creative! Good luck!

What a bind....the natural instinct is to not go back to work and really throw some proactive effort at this problem, but that penalizes you....via insurance.
No way do you want to throw her in daycare....I'd be very concerned that they would not now how to protect her or enhance her development. It's true you also do not want to be overprotective.
I'd contact the local school district...they have early intervention programs (or they should) and might be able to give you a better idea of what to expect in the long-run, as in what public schools offer, and what other parents have done in such a case.
The state has programs for the "uninsurable". High risk pools...do not know how this fits your situation, but it would be worth looking into.

M.,
Congratulations on your new daughter !!!!!! Having a girl is the best!!! I have a 10 month old daughter myself.
Here is a website I found. I hope this helps you research this condition. Have you made an appointment with a Pediatric Ear,Nose & Throat Doctor in your area yet? I would do that first and then go from there. I do wish you and your daughter the best!! http://www.nidcd.nih.gov/health/voice/vocalparal.asp
Sharon

Sorry, I don't have any suggestions, the only thing I can offer is prayer. I will pray for the complete healing of your daughter. God loves your family so much, and he is a God of miracles. That doesn't mean he always creates the type of miracles we are looking for or that everyone is healed. However, I will pray that God heals your precious little girl. He cares about every aspect of your life including your finances.

Take care,
K.

I am 19 i was born with paralyzed vocal cords also as your daughter. I am doing ok, don't worry she will be fine.

Has anyone spoken to you about OCSHN? It stands for the Office for Children with Special Helthcare Needs. Your daughter might be eligible for Family Support Services under their "Children and Youth with Special Healthcare Needs". Contact Az Mentor, I know they are a provider for this program: ###-###-####
In my opinion (as someone who works with children with special needs both developmental and medical), I'd say if there is any way you can limit your daughter's exposure to illnesses during the cold and flu season it would be best. So maybe finding a person who could watch your daughter at your home would be best. However, bear in mind that if your other children are school age, they will be bringing home illnesses with them from school. You can't totally protect your child from getting ill, all you can do is try to prevent it as much as possible. With that in mind, if you can't have someone come to your home to watch her, and it doesn't sound like you quitting your job is a feasible answer, go ahead and try daycare, and if she gets sick while there, then maybe you can start looking into other options (such as your husband staying home some days and you staying home some days...think telecommute).
Hope this helps! :)

Yes. I have. I am 46 years old. I was born with a right side partial paralysis of my vocal cords. Whenever I tried to talk, my voice sounded like a cat! When I got to be 18 months old, I only said a few words. When I started talking, I still had a very hard time talking. After I got to first grade, my first grade teacher told my mother that I was having a hard time reading, spelling and My classmates treated me different. My mother started crying and then she took me to get evaluated by Dr. Harold Reuter in the Houston Texas Medical Center. I thought that I failed the 1st grade because I was sick with Pneumonia but it really was because I had surgery to correct my right side vocal cord paralysis and The secondary condition that I got was Pneumonia. I had to get a Tracheotomy on the front part of my throat so that I could breathe better. I had a long recovery and That is why I had failed 1st grade. I had always wondered why I had a scar in the front of my neck and My boyfriend knew all along because my mother had told him in the year of 1982. Last year I had reconnected with my ex-boyfriend. When we were in high school back in the 1980's, we were high school sweethearts. I did graduate with a high school diploma in 1985 and I also have 84 hours of college credit from college. My major is Social Science. I just have to finish 7 more courses and I will graduate with an Associate of Arts Degree in Social Science. There is hope. Don't give up. I hope that everything works out for your daughter. Dr. Richard Stasney is also another wonderful Ear, Nose and Throat Specialist. He is located in the Houston Texas Medical Center. I hope that this will help your daughter get better. God bless you, your daughter and your family.
Sincerely,
D. W.

Hi,
I just wanted to relieve some fear you have about insurance not covering her pre-existing condition...If you can show proof of previously uninterrupted insurance coverage, most insurance companies will waive that restriction. Also, the pre-existing condition clause does expire after a certain period of time; which you should not have to worry about with the previously uninterrupted coverage that you currently have.

Hey M.,

I wouldn't put her in a daycare until you have a good handle on what her condition is. In Arizona, as I am sure you know, the requirement is 2 adults to 13 infants. That's not good odds for your daughter receiving the kind of care she needs right now. Heck, in my opinion, it doesn't seem like good odds for anyone's kid. If you feel you must return to work, I'd consider a nanny situation, or an in home daycare where she'd be the only infant. I know you're in a pickle, and I feel for you. If benefits are the main concern, I'd check out the programs through DES. Maybe you are uncomfortable with that, but those programs exist to help people through challenging situations, and they have particularly good insurance programs for children. I'm throwing that out to you only to encourage you to know that you have options, and that you should follow your instincts in this instance. If you think you should stay home, you should. If you are completely comfortable going back to work, then that's the right choice. Another option would be to find a daycare super close to your place of work where you could stop in a couple of times a day to check on her. That's what I did initially when I had my daughter.

Good Luck, and whatever you decide, be confident in your decision. As long as you are acting from a place of concern for your daughter and her needs, you will be doing the right thing.

A.