SHAE-LYNNE'S STRUGGLES WITH INFANT REFLUX
Written Feb 2001 by RMacLean
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Thanks for your interest in Shae-Lynne's story, I'll try to be brief.

Shae-Lynne was born on May 16, 2000.  She was a beautiful 7lb little girl.  Almost immediately we knew something was not right as she would not eat  and never woke crying for food.  We struggled with force feeding, failure to thrive and excessive vomiting while her doctors performed hundreds of tests trying to find the cause.  She was admitted to hospital after hospital, over and over and over again for weeks at a time, in the attempt to get some answers.

Feeding time alone was almost more than I could bare.  Every three hours I would spend an hour and a half just to get one ounce (two if I was lucky) into her.  She cried, arched her back, fell asleep, wouldn't suck, wouldn't swallow, wouldn't even open her mouth most times.  Unless you have been there, I am sure you cannot imagine how hard it is to feed a baby who simply will not eat, most people have never even heard of such a thing.  It is exhausting and heartbreaking to say the very least and I think the hardest part is being blamed.  Of course the child will eat, that's what babies do, so better blame mom.

When she was three months old a nasogastric feeding tube was inserted in the hope of putting some weight on her and the vomiting persisted.  It was  shortly after this, that she was diagnosed with Gastroesophageal Reflux Disease or GERD and slow gastric emptying.  Upon doing an endoscopy it was discovered that she had inflammation from her little throat all the way to her bowels.  This was while she was on Zantac, a drug that is supposed to block the acid that is being produced by the stomach, thereby stopping the irritation in the esophagus.

When  she was about five months old she hit what I thought was her peak in terms of vomiting, and she still wasn't gaining weight so they inserted a nasojejunal tube for feeding.  This goes directly into the second part of the small bowel (jejunum) so there is never food in the stomach.  Makes sense, no food, no reflux, right?  Wrong....her vomiting continues.

At the time of this writing (Feb 2001) she is vomiting an average of ten times per day even with no food in her stomach.  How can that be you may ask?  That is the million dollar question.  I am told there is nothing left to do but wait and hope she outgrows it.  How can I sit back waiting and watching my beautiful little baby suffer?  Her vomiting has caused her to stop breathing numerous times, she has aspirated, she screams almost every time and she has even thrown up her feeding tube.   It is the most violent gagging, retching, and choking I have ever seen and each time it lasts about five straight minutes.  It is terrifying and painful for her and heartbreaking for me and her father to watch.

At almost nine months old she is about 13lbs and still failure to thrive.  I wish I  had words enough to express what this has been like for Shae-Lynne as well as her father and myself these past months.  Unless you have watched your child starve themselves, scream, whine and whimper in pain most of the day, vomit like I have described everyday, month after month, and be labeled failure to thrive, you could not possibly understand.  I only want to take away her pain.  I feel so desperate to help and yet don't know how.

*Updates can be read in the journal section of the site.