*reflux awareness and Casey's story...PLEASE READ*

As a way to stay partially sane and get in touch with moms who also have children with reflux and/or food allergies i am part of the reflux rebels on http://www.babycenter.com/. These moms are amazing and together we offer support. Its really indescribable how much they have helped me and I hope I've helped a few along the way too.

Those of you who have followed our story know all the scary moments we have had with Delilah when she stops breathing and turns blue. We have seen multiple doctors and it took quite a while before we got anyone to actually listen to us. We have been through so much but Delilah is a fighter and so am I. I pushed my weight around and demanded for an apnea monitor and numerous tests. Because of this my daughter is still alive.

I met a mom on babycenter who had a little boy named Casey last September. He was going through a lot of the things that we had already gone through since Delilah is 8 months older than him. They had the usual tests to "diagnose" reflux like an upper GI, barium swallow study, etc. Unfortunately for us all these tests told the drs Delilah had reflux but didn't get them worried about anything. This was beyond frustrating for us. Casey's mom was told to give him Previcid for reflux and sent them home with an apnea monitor and pulse oximeter. He continued to do poorly and started to not meet milestones so he had more testing on his brain function, just like Delilah had. They also ruled out any brain abnormalities. Their family just kept getting told "to go home and wait". Because of this "wait and see" tactic Casey is no longer with us.

This hit me very close to my heart as Ive been there, I've heard those things, I've fought with those drs and my daughter still turned blue. I haven't been able to stop thinking about this since Casey's extremely courageous mom Brittany came forward with his story in an effort to get awareness out about reflux and the possible complications. Not all babies "just have reflux" and are "spitty" some have a serious medical condition and if not corrected or treated properly they too could succumb to reflux. Of course with a baby under 6mo of age they will determine the cause of death as SIDS even though its VERY APPARENT the reflux and aspiration was the factor that took this sweet boy away from his parents and sister.

I want to get the word out on reflux. I want people to understand that they have other options than what their physicians are telling them they have to do. There are ways to treat with OTC meds and Bufferbabies . Every child can beat this and with the proper support from our physicians this would be much easier on us moms. I want more than anything to start some sort of non profit organization to get more info out to parents and physicians. I truly believe if Casey's parents had the support they should have had from their physicians he would be here as well. If ANY of you are familiar with starting up non profit org's or ways to organize donations please email me at simplysnell@hotmail.com (I want to help moms who cannot pay for their child's necessary meds or formula and/or help fund more research and education to our physicians to better help parents and children). I have faith that someone who will read this will know someone who knows someone who can help me get this started.......

Below is Casey's full story as told by his courageous mother Brittany...

My son was born 9.20.09 at 38 weeks 1 day and was perfectly healthy, other than a little retracting at birth. He went home with me from the hospital and we enjoyed the first two weeks of his life just as every family should. The day he turned two weeks old he couldn’t keep anything down and wasn’t urinating so I took him to the ER. He was given fluids and observed over night. Although he was still throwing up, he began to urinate and was sent home to follow up with the pediatrician. At the follow up with the pediatrician she said he looked septic and directly admitted him into the hospital where he stayed for 10 days. During those 10 days he had 2 cyanotic episodes (he turned blue) while eating, both which required him to have assistance breathing. While in the hospital he had many tests including an upper GI (which showed reflux), a modified barium swallow (which showed normal anatomy) and an esophagram (which ruled out a fistula). He was diagnosed with severe GERD. (Reflux) He was sent home on Prevacid, an apnea monitor and a pulse oximeter.

Before our follow up with the pediatrician Casey got a fever and she told us to return to the hospital, where he stayed for 3 more days. He had a gastric emptying study which showed he had delayed gastric emptying, at 94 minutes as opposed to the normal of 45. This only made his reflux worse, so he was given Erythromicin to speed things along. We were told he needed a surgery called a fundoplication and he began seeing a pediatric GI specialist. At that point the doctor felt it wasn’t necessary so our next step was just to wait and see if he improved.

Casey failed to meet his developmental milestones such as eye contact, fixing on objects, tracking objects and lifting his head. His eyes were tested and found to be perfect. Then he was set up to meet with a neurologist. He continued to choke while eating and turning blue. It became our normal. He turned blue at home one night and was lethargic for a while afterward and his pulse ox stayed low for a few minutes. I paged the doctor and we were once again sent back and he was admitted to the NICU for 3 days. While there an EEG and a CT scan were performed. Both of which were normal. He saw a developmental specialist and was diagnosed with hypotonia (low muscle tone) and started physical and occupational therapy immediately. He was scheduled to have an outpatient MRI done and sent home. A follow up with the GI doctor got us nowhere. His tactic was still to “wait and see”.

The Tuesday before Thanksgiving we saw the GI doctor AGAIN and were told to wait and see, although he was still choking and still turning blue. That night Casey turned blue 3 times in an hour. This was not normal for him at all, so once again we packed our bags and headed up to the hospital. He had his MRI, which was normal, and a 24 hour EEG, which was also normal. He continued to choke and turn blue during feedings and was switched to Prilosec. He became a happier baby and began to smile and look at us for the first time in his life. We were amazed. After 6 days Casey was sent home.

Although he continued choking and turning blue, the pulse ox and apnea monitor were no good. For the apnea monitor to go off he had to be completely still and not breathing for 20 seconds. When he turned blue he was struggling for air so it did no good. The pulse ox told me when his oxygen saturation was low, but since this mostly happened when he was eating and he would choke loudly, I was always aware of it, so he was taken off the monitors.

On December 7th Casey had another modified barium swallow. This, once again, showed his anatomy was normal and the speech pathologist said he was choking due to his reflux. (No shit, we already knew that!) We saw the pediatrician after the barium swallow and talked to her about Casey’s milestones again. It was then thought that Casey had hypotonic cerebral palsy, but that diagnosis could not be confirmed until 5-7 months. That day our pediatrician called the GI doctor and told him what was up. He still didn’t think he needed the surgery so our pediatrician found a pediatric surgeon to do the surgery and set us up an appointment for the next Monday, December 14th.

December 13th he choked in the evening pretty bad, but had no color change. He became tired, which he often did after choking, and his cry sounded a little weaker but I didn’t think it was too bad. His lung sounds were clear, I had my husband (a paramedic) double check. He was going to meet with the pediatric surgeon the next day so he could be checked out further then. We went to bed a little after midnight. At 1am I was woken up by the dog whining. I yelled at the dog to shut up, reached over, touched the baby, kissed the back of his head and realized he was cold. He wasn’t breathing and didn’t have a heartbeat. I breathed for him while my husband (who was on duty) did CPR while we waited for the ambulance to get there. I called a sitter for my 2 year old while they worked to get his heart beating again. They were still doing CPR when the loaded him in the ambulance. I met the ambulance at the hospital and they were still doing CPR. They tried and tried at the hospital. The doctor took us aside and gave us “the talk”. He was going to try for a few more minutes, but since they had been doing CPR for over an hour he didn’t feel there would be any benefit of continuing. My husband and I left the room to take a second to ourselves and we were called back in. They were going to stop CPR but as we walked back into the room his heart began to beat again. They did an x-ray to check the placement of his breathing tube and the x-ray showed that he had aspirated. At this point our pediatrician was up there explaining everything. He looked really good considering what had just happened and we were told he was going to live, but he would never be normal again. The ambulance from the children’s hospital came and loaded him up. We left at the same time as them. We went home to pack our bags, preparing for weeks of a long recovery in the hospital and got some breakfast. My dad drove us up there so we wouldn’t have to pay for parking.

It was my husband’s birthday.

When we got up there it was around 5:30am. When I got into the room to see him I immediately knew something was different. I could tell he just wasn’t ‘there’ anymore. I asked the doctor if something had changed and she said no, then asked what I knew. I told her I knew he would live but would never be normal again. Her eyes changed and the room got silent. Then I was told he wasn’t going to make it. We spent the next 2 days there and it was the hardest two days of my life. We decided to take him off the ventilator and he died in our arms, without pain, at 9:09pm on December 15th.

One doctor said he died from complications with his reflux, while another doctor called it SIDS. We are still (6 weeks later) waiting on the pathology report to determine exactly what it was. I miss him sooooo much I can't even begin to describe it.

We hope to one day start a scholarship program in his name. Until that time comes we are just trying to make his story known so that NO ONE has to feel this pain, and NO BABY suffers from reflux again! Feel free to join his facebook memorial page: http://www.facebook.com/#/group.php?gid=432346190564&ref=ts and help us share his story. Thanks.