Teen Issues: Having a Child with a Chronic Health Issue
In the February 2012 edition of VOYA, I write an article about food allergies and teens. In it I share that my passion for this topic began because I am the mother of a toddler with severe food allergies that cause her chronic health issues. One of her symptoms is chronic, silent reflux. Silent reflux is GERD disease, she basically has heartburn so severe that she can’t sleep through the night. Sometimes she can’t even run down the street. There is another side to this for me when I think of teens: it’s not just about teens that have food allergies, but what about teen parents who suddenly find themselves parents to a baby, infant or toddler who has some type of severe or chronic health issue. Not just a food issue, but any health issue.
A couple of times a week there is a teen mom, 14 years old, who brings her 5 week old baby into my library. She has a lot of support from her family and is a very lovely young lady. Her baby is always asleep on one of our library chairs and is just adorable. I can’t help but wonder what it would be like for her or any teen parent out there trying to balance school, being a teen, and not only being a mom – but being a teen mom to a child with some type of health issue. One time when taking my child to Children’s Hospital I did run into a teen who was the mom of a child with Downs Syndrome and they were there having his heart checked. Suddenly, their need for information expands outside of typical teen parameters. They need to know how to research and find not only important information, but how to advocate for their child. Now they don’t need you to help them find what the next vampire book they want to read might be, they need you to help them find safe foods, treatment options, etc. They are thrust into a very overwhelming adult world.
If you have never been the parent to a child with any type of special needs, it can be difficult to understand how isolating and stressful and heartbreaking it can be. Every component of parenthood is taken to the next extreme: there is more planning, more preparation, and always, it seems, just more. I would also be interested in reading more about teen parents who find themselves the parent of a child on the Autism spectrum.
It is important to remember sometimes that we do and will serve teens with experiences outside of the norm, including teen parents (though these may be more inside the norm then we would wish for our teens.) Below I share with you an essay I wrote while in the throes of my child’s illness and trying to get a diagnosis and a handle on it. I hope by sharing that we will all take a moment to think about our teen parents that we serve and reflect upon the fact that for some of them, their challenge is harder then we can imagine because right now their babies are being diagnosed with something that no parent is prepared to handle, let alone a teen parent.
It was only because I spent a TON of time at my library researching, researching, and researching some more that we were able to bring our child to the point that she is at now. We researched treatments, which included sleeping positions and diet restrictions; we researched doctors; we found online support communities; and most importantly, we found the right questions to ask. Teen parents won’t have these skills and will need your help to develop them.
A couple of things to remind teens:
- First, when dealing with a health or medical issue, remind teens they should always work with their doctor and not try anything they run across in their own research without the assistance of a doctor.
- When dealing with something that has a name, there is often an established foundation – direct teens here first. Rule number 1 still applies, but this information will often have more credibility then other sources.
- For support, there are often various forums or yahoo types of groups that teens can join to share their experience with those having similar experiences. The emphasis should be that these are for support primarily and any medical advice they may receive should be discussed with their doctor.
- This is a good opportunity to introduce teens to your journal databases and guide them away from general Internet searches.
- Remember that as library professionals we know all of the above, but teens often don’t and there is a sort of fear and desperation that can cloud rational thinking in the midst of these times. Be kind and patient (as I know you will be).
- If you know of any local support groups, this is a good direction to point teen parents.
A look at a parent in the midst of the chronic illness of a child . . .
Trying to Slay the Reflux Demon
Most moms like to go in and sneak a peek and watch their baby sleep. Me, I couldn’t stand it. It was our first sign that something was seriously wrong with our baby. She looked like she was possessed by demons while she slept. She would flail. Arch her back. Make that startled movement you make like you are dreaming that you are falling off of a cliff. She would scream. And most horrifyingly – she would stop breathing for a few seconds.
My husband and I would take turns holding her throughout the night to make sure she lived. He worked until 4 a.m. and then he would come in and take over. I would get about 2 hours of sleep and then get up and go to work. When it happened, when you realized it had been a few seconds since you felt that rhythmic in and out of her chest – you would jostle her a little until it resumed. Whenever we mentioned it to the doctor he would say, “as long as she doesn’t turn blue – it is okay.”
And then that moment happened. My 6 year old and I sat there playing on the computer while the 6 week old slept in her swing. My husband was out looking for the new car he was sure we needed with a new baby. Suddenly I looked over and threw the laptop across the room as I screamed, “holy sh&t she’s blue.” We grabbed the baby, called the husband and raced to the ER. The simple act of grabbing her out of the swing scared her into breathing. At Children’s Hospital they made us take Infant CPR classes and monitored her for the day and night. Then they sent us home with an apnea monitor.
This was already our second trip to Children’s. The first occurred at 5 weeks when we thought she was having seizures. They pulled us right out of line when they saw it happen and rushed us in to see a doctor. She was being treated for infant reflux and after a few tests and observation the doctor’s assured us that she wasn’t having seizures but that it too was caused by her infant reflux.
They used to call it colic. Now they call it infant reflux. Me, I don’t care what they call it – I call it the reflux demon. I just know that it sucks – for the entire family. The first 7 months of her life she screamed 24/7. I wore her in every type of babywear gear you could fathom. We held her all night long as she slept. We bought specials beds. We tried various diets. And we gave her medication.
But nothing has ever really stopped the pain for her. She still sleeps like she is possessed by demons. Flailing, flinging, arching and making a variety of noises to try and get the pain out of her chest. She often coughs and is rubbing her nose because it bothers her all the way up to her nose. And often she cries – when she wants to eat and can’t because of the pain, when she wants to sleep but can’t because of the pain . . . it always comes back to the pain.
There are fewer things in life I think that will ever piss you off than seeing your baby be in pain and having absolutely nothing you can do about it. I mean seriously full out seething below the surface anger that makes you want to cuss out the universe that dares to hurt your baby. If another human being hurt my child I could have some type of recourse. We often say to ourselves, if anyone hurt my child I would kill them. I wouldn’t think twice about it. And yet, here my child is hurting and there is no one I can kill. No one I can lash out at. No one I can make pay. No one I can make stop. The universe is kinda too big for me to beat up I think.
So instead I continue to try to find the foods that she doesn’t digest well – that she is intolerant to – that make the reflux worse. I spend all my time researching and trying and visiting doctors. Not to mention all my money. I pray every night before we go to bed that somehow this night will please please please somehow be different and the demons will leave her alone and let her sleep in peace. In 20 months, she has only had 4 nights where she wasn’t visited by the reflux demon. I’m still trying to find my reflux exorcist. And tonight when I go to sleep again, I’ll pray that my prayers won’t be in vain. I can not slay the universe, but damn it – I want to slay the reflux demon.
About Karen Jensen, MLS
Karen Jensen has been a Teen Services Librarian for almost 30 years. She created TLT in 2011 and is the co-editor of The Whole Library Handbook: Teen Services with Heather Booth (ALA Editions, 2014).
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