Well, I am going to begin by saying that if I could, I would wipe the entire month of May off of the 2011 calendar. Kaylee was in a touch-and-go situation for pieces of it; she endured not one but two g-tube surgeries, countless sticks with needles, and spent as much time in a hospital as she did at home. Yet, now that we have gotten the feeds under control and she is showing signs of improvement, I will share some very important information that I learned about my daughter. Information that I would never have even thought to look into had the doctors not been so worried about getting to the bottom of her failing health. Issues that could possibly be relevant to your child– especially if he/she has difficulty bottle feeding and/or was born with a cleft or high-arched palate. Please know that I post this to help share insight I gained about my daughter that, in some respects, may save her life one day– not to scare you about the health of yours.

Here it goes:

About the beginning of April, I noticed that bottle feeding Kaylee was becoming an even bigger, longer, more stressful event than it was before. Instead of latching on to the nipple of her bottle within the first minute of putting it in her mouth, she would “play” with it. It would sometimes take well over 5 minutes of ‘working’ the nipple to get her to latch on, and then as soon as she would get a steady suck going, she would lose it…starting the process again and lasting well over an hour sometimes just to end up with a 2-3 oz feed. I assumed it was because she was teething (which, for the record, she wasn’t), and I tried to compensate with oral baby-food feedings, supplemented with Duocal. By the end of the month, however, I realized that she was not getting enough calories, and more importantly, she was not getting enough liquid into her body to sustain her health. What used to be ‘great’ days of 14-18 oz of formula + 2-4 oz of food became 3-4 oz of formula and 1-2 oz of food.

She became dehydrated.
She was hospitalized.
She was rushed to CHOP for g-tube placement immediately.

After the first tube was placed, the Department of Speech and Swallow at CHOP wanted to do a barium swallow study on Kaylee to see what, if anything, was happening when she was feeding. What they found surprised and scared me.

I never realized that all babies, around the age of 3-4 months, lose their sucking reflex. For typically-developing babies, they never falter because by that time, they learn a purposeful swallow. Kaylee lost her sucking reflex…but she did not learn how to purposely swallow. She had very weak esophogal function, exacerbated by her overall low muscle tone. As a result, all of the liquid that would drip from her bottle’s nipple would pool into the back of her throat, and she was aspirating some of the liquid into her lungs. If you are not aware, this is very dangerous– fluid in the lungs is the leading cause of pneumonia, and Aspiration Pneumonia, according to my GI, is the leading cause of death in WHS children.

Because of the results of this test, we now know that Kaylee cannot drink from the bottle. She began feeding therapy today to teach her how to develop and maintain a purposeful swallow. She will begin with stage 2 foods, as thin liquids and stage one meals still pose a great risk of going down the “wrong way.” She will also begin cup-training, which should help her avoid aspiration-risk. The one thing we know for sure is this: No More Bottles! We also need to carefully monitor her overnight feedings as she does suffer from reflux. Should she vomit her feed in the middle of the night, as she has done several times, she is in greater danger of aspirating the liquids. The insight this test provided has not necessarily given me peace of mind, but the awareness of the potential dangers it could cause has made me alert to things I might have otherwise looked over as typical occurrences in children with reflux, and there is something reassuring about that.

2) Because of Kaylee’s persistent issues with nasal congestion and labored breathing which has landed her in the hospital multiple times this year alone (she has to have Xopenex breathing treatments at least 1-2 times per day; the doctor thinks she has allergies, if not the early signs of asthma), her pediatrician recommended that I take her to see a pulmonologist. After reviewing (yet again) her health report, he informed me of something I found not only ‘new’ to me, but very significant: because Kaylee has a high-arched palate and a recessed chin (as many WHS children do, although sometimes there is a cleft in the palate, as well), she is more prone to suffer from sleep apnea. He ordered a sleep study, and last week, I took her to the sleep center for the testing. Today, I received a call that the results came back positive for mild sleep apnea. This is good news, as it does not require to her have CPAP breathing assistance at night. However, he did warn me that she ought to be closely monitored to ensure that her condition does not worsen over time…which, apparently, is not out of the question. Of course, the hope is that it improves over time, but to me, a sleep study is one test I never would have thought to have done on my daughter.

Again, I am not writing this to scare anyone or add anxiety to those moms who might be prone to worry. Lord knows, I am an expert in that field, myself. The truth is, though, that I learn more about this syndrome and the things to look for (and look out for) from other moms. I just didn’t want to keep this insight to myself~ especially if it might help change or save the life of one of our babies. According to CHOP, the results they discovered about Kaylee are not unique to her; they can be quite common among any child who has a genetic disorder.

On the plus side, I am happy to share that Kaylee IS thriving now that she is finally eating and fully hydrated. Her strength is improving, and her personality is really beginning to take hold: she’s my happy, giggly, cuddly munchkin. (And as soon as I find my camera adaptor cord, I will upload some recent pictures of her).

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6 Responses to One thing leads to another…

  1. Shannon says:

    Thanks for sharing Laurie. I think Emma might need to have a sleep study, she sometimes seems to hold her breath for a few seconds when she’s sleeping.

  2. Carol-Anne says:

    Hi Laurie

    Thanks for sharing this. We have also just been told that they think Harry has the early signs of Asthma. He is constantly congested and they have given us inhalers which are working really well. Like Kaylee he has a high palet. He has stopped breathing on several occasions (mostly during his seizures)and this is really frightening. Its interesting to know that this could be in relation to the high palet and recessed chin. I have just bought an apnea mat for him to sleep on and gives me so much peace of mind.
    Take Care

  3. Leonie says:

    Poor little Kaylee, glad to know she’s doing much better now. Our WHS kids are so brave – and I think as parents we are pretty brave too!

  4. Heather says:

    Thanks for sharing this. It’s been recommended that we have a swallow study done for Frank, and I keep putting it off, thinking it’s really unnecessary since he does take in a good amount from the bottle each day. I think I’ll reconsider it, to be sure he is purposely swallowing. I’ll ask our doctor about a sleep study as well. I am SO happy to hear that Kaylee is thriving now. Thanks for sharing your lessons learned with the rest of us.

  5. lite says:

    she is the lite of my life.I believe in her she is so special.there is no mistakes.In her we are the ones with the problem.you see black and white.I see colors,what is normal.I know that i am not perfect. but she sure makes me feel that way.I thank god for the gift of being in her life. see if you open your heart.even if it has been ripped apart.the only one that can mend it is you.and once you mend youre self.you can see the beauty. in the inperfections.look at youre self.you hold the key.stop being afraid to look behind the door.what wont break you. will make you stronger.she is my gift this little lite of mine

  6. shirley bidnick says:

    This information is amazing. It explains what Rochelle went through when she was Kaylee’s age. The difference is that in 1982 she was still undiagnosed and swallowing studies were not done. She suffered from failure to thrive, aspiration pneumonia, and sleep apnea. She had difficulty swallowing. No one knew why. Kaylee and other children with WHS have access to much better health care now and this is going to result in better outcomes for them. Their future is brighter.

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