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How exciting to say that BTG is now on its 6th year of “Color it Periwinkle” to raise awareness for EA/TEF.    It is amazing to know that a small group folks who started this movement back in 2011, has had such an amazing and positive impact.   May we continue to grow and raise awareness for our present, past and future EA/TEF children and adults.   I would especially like to thank all the folks who helped this movement of awareness to grow over the past 6 years.  You have all been amazing!

As we ring in the New Year, I ask everyone to please take a moment and join our cause to raise awareness regarding esophageal atresia/tracheoesophagel fistula.

What can you do to help?

The answer to this question is very simple.  Spread the word!   There is no travel required and we are not asking for donations to such a cause.   We strongly believe that by sharing stories, facts and other aspects we can reach the eyes and ears of many.  The more people advocating the greater potential that awareness will increase and that a birth defect that most often elicits a “What is that?” will become “I know what that is!”

Share our facebook event ticket to help raise awareness:

https://www.facebook.com/events/1926369907591208/

 An estimated 120,000 infants in the U.S. are born with birth defects each year. Genetic or environmental factors, or a combination, can cause a birth defect; however, the causes of 70 percent of birth defects remain unknown(1), 

The March of Dimes statement above, is a powerful statement which provokes thought regarding the need for better research and awareness pertaining to birth defects in which there is no known cause.   It is extremely important to promote prevention to ensure all women have a healthy infant; however, it is also equally important to push the envelope, raise awareness and advocate for those infants born with a birth defect which has no known cause.

In the month of January the March of Dimes holds its annual “National Birth Defects Prevention Month”.  This national event insipired my husband and I, in 2011,  to start the First Annual Worldwide “Color it Periwinkle to raise awareness for esophageal atresia/tracheoesophageal fistula”; a birth defect which falls into the category of “no known cause”.

“My child is 1 of the 70%”

I look at this statement and even after 8 ½ years, it is still a hard statement to digest, but also one that has driven me to advocate for my child and many other children born with esophageal atresia/tracheoesophageal fistula (EA/TEF).  We firmly believe that more research means better tools to advance the medical technology and other arenas for children born with EA/TEF and the multitude of additional birth defects that can co-occur with this condition.

Facts about EA/TEF

There is no known environmental cause and/or direct genetic link to esophageal atresia.  It is known though, that more research needs to be done regarding EA/TEF; not only to formulate the cause of this birth defect but to understand the potential lifelong complications our children may face with such a medical disability.  The variations of EA/TEF are so complex however and not every child is born with the same set of circumstances which can make it that more difficult for the medical community to differentiate how it will effect our children in the future to come.  EA/TEF is truly a puzzle that has yet to be put together.

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fleurroseEAT is a European charity based non-profit with EAT members from France, Italy, Austria, Germany, UK, and the Netherlands.  Their primary focus is to provide support to both EA families and health professionals. They do welcome associate members from all parts of the world.

EATs 4th International Conference on EA is scheduled for September, 2016 in Sydney, Australia!

Be sure to check out their website for complete information!

Below is a list of EAT member website links:

AFAO (Association Francaise de l’Atresie de l’Oesophage) – France
www.afao.asso.fr

FATE (Famiglie con ATresia dell’Esofago) – Italy
www.atresiaesofagea.it

KEKS (Kinder und Erwachsene mit kranker Speiseröhre) – Austria
www.keks.at

KEKS (Kinder und Erwachsene mit kranker Speiseröhre) – Germany
www.keks.org

KEKS (Kinder und Erwachsene mit kranker Speiseröhre) – Switzerland
www.keks.ch

OARA (Oesophageal Atresia Research Association) – Australia
www.oara.org.au

TOFS (Tracheo-Oesophageal Fistula Support) – UK
www.tofs.org.uk

VOKS (Vereniging voor Ouderen en Kinderen met een Slokdarmafsluiting) – Netherlands
www.voks.nl

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Today’s blog is written by Nanette, mom to Willoughby and this is their journey.
Cry.  Cry, baby, cry.  Please cry.
It was that moment. That heart-stopping moment right after giving birth that you see in the movies; when you wait for the baby to cry to let you know he’s going to be okay.  And that’s what we were waiting for.
“There it is!”
 A garbled cry from our boy, Willoughby a.k.a Will announcing himself to the world.  And then it all but disappeared, his little voice no doubt muffled by saliva and other secretions he couldn’t swallow.  A circle of doctors surrounded him, assessing him.
       “Is he okay?” I asked whoever was surrounding me, lots of people in scrubs.  My husband paced in between me and the baby, not sure where to be.
            “Sure, you heard him cry, right?” But still, at that moment, that moment of the garbled cry, we knew.  That what the doctors had suspected, what they had been watching for the last trimester of my pregnancy, what they hoped would not be was in fact, true.  Our son was born with a tracheoesophageal fistula, meaning his stomach and esophagus were not connected.  This meant he needed surgery as soon as possible.  Of course, since he was born five weeks early at just 3 pounds, 13 oz, this was going to be complicated.
            On the day of Will’s surgery we sat in my hospital room, pacing, crying, waiting.  Unfortunately, I had a roommate with a perfectly pink, fat healthy baby who seemed to do nothing but nurse—a constant reminder that it would be a long time before my baby could ever do such a thing.  Finally, the surgery team came to report.
            “Well,”the surgeon said.  “We repaired it.  It was a long gap so we can’t guarantee it’s going to hold.”  It did, though.  Will lived up to his name; strong-willed, feisty, even when covered with tubes.  He hated being suctioned.  When the nurse would come over, he always reached for her hand; an early indicator of the incredible people person he would become.  Eventually, he was moved out of the back room of the NICU.  The nurses said the closer the babies got to the elevator, the sooner they were going home. It took Will six weeks (and a few setbacks) to reach this milestone.
            It was the longest six weeks of our lives. We crossed our fingers for our favorite nurses, watched the monitors like hawks, begged Will to learn how to eat and breathe without desaturating (not easy) and basically willed him to come home. The bells and beeps of the monitors going off made me feel queasy; the smell of the hospital soap seemed to permeate everything.  I tried not to concentrate on that and instead focus on Will’s healing and his emerging personality.  As it turned out, he loved to nurse, loved to be held and screamed like a banshee the second he heard my voice in the NICU.  And one day, finally, we got to take him home.
            Our happiness was short-lived since a couple of weeks later, he started having blue spells while eating.  Really choking and not being able to get his breath back.  Back to the hospital for an esophageal dilation and back to the dreaded NICU.  Our nurses were shocked; “what are you doing back?” This time, he only stayed for one night.  And when he came home, he could eat.  And eat he did.  Finally, he started to gain weight and look like our fabulously strong baby boy.
            Mostly, it’s been a great year.  Will is an amazing baby; his smile is infectious and he smiles often—even when he first wakes up in the morning. We call him the inspector because anything you hand him has to withstand a battery of tests (can I eat it? What happens if I smack it? What happens if I drop it?). He can’t take his eyes (and hands) off his big sister.  He is a joyful, smart, charming, mischievous child and it’s an honor to be his parents.  Really, that’s how we feel.  Even at four o’clock in the morning when we’re pleading with him to go to sleep and stop talking.
            There have been down sides.  In September, he caught two bouts of croup back-to-back and wound up in the PICU for six nights.  His first night there no one could seem to get in I.V. in his arm (after eight tries) and I spent the night trying to nurse him a little at a time so he would stay hydrated.  After that, we became super ultra paranoid about germs (even more than we were before) and started avoiding large social gatherings.  Restaurants?  Parties? Trains?  Usually, we skip them.  At least until after cold and flu season.  We can’t bear to see him sick.  Just can’t.  So we’ll be a little more social once he’s older.  Hopefully, we’ll still have some friends left by then.
            Feeding him can be complicated.  He does fine with baby food.  The introduction of solid food has had its ups and downs.  There doesn’t seem to be any real “rules”….just trial and error.  Some foods are instant successes; like spinach pancakes, buttered toast, yogurt, baked sweet potatoes.  Others work sometimes but get stuck on occasion (like bananas or watermelon). Others are a nightmare; I will never look at corkscrew pasta the same way again.  I dream of the day he can bite into a sandwich the way his sister does.  He is watching her; I know he wants it too.
LOOK WHO’S TURNING ONE!
          
           And now our baby boy is turning one. He will get an ice cream birthday cake so he can enjoy it without worrying about choking. We feel a lot older than we did last year at this time. But we also feel lucky.  And even as I write that word, it makes me nervous because I always feel slightly panicked that something else might happen because realistically, it might.  Will he need another dilation at some point?  More than likely.  Will he wind up in the hospital again with croup?  Oh, we soooo hope not.   But for now, we cross our fingers, look at our happy, lovely, strong, tough, loud little boy and say“thank you.”

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Truth be told

Truth be told, most often we talk about our children and the struggles we have gone through with them, what we can do for them and how we can advocate for them.   I was asked the question the other day “How are you doing?”  and started to answer with what has been going on with Brandon and the person stopped me and said, “NO, stop, how are you doing?, How do you feel?”   I think at that point, I realized I had built this wall around me and was set into autopilot to do what I needed to do.  Don’t get me wrong, I felt things yes, but I did not feel those things, if that makes sense.  In a very short timeframe, my mind had to accept what was going on with my son medically.   Whether I wanted it to or not, my life changed.

So within the safest place I know, with my written words; I will tell you how I am.  I can’t say its pretty, but then again whose feelings are?   Some days, even when we are at our best, we are sometimes at our worst.

When I learned of Brandon’s medical conditions, I accepted them.  I knew life would change as we knew it but I also held tight to hope that as he grew older things would get better.   In that aspect, I had strength and courage.   I held my head high knowing I was making the right choices and fought tooth and nail on every medical decision.  While I knew our journey through the medical realm would never be over, I accepted that as a part of our life.  Over the past year, things have improved healthwise for Brandon.   I cry and I am elated that he does not have cancerous lesions in his esophagus and I am overjoyed that his tracheomalcia is getting better.  The endless nights of coughing and bouts with RSV, Croup and pneumonia were tiring to us all to say the least.  Throughout all of this though, I felt brave and proud that I was such a good advocate within the medical community for my son.  My son taught me things about myself that I never knew were a part of me.

I watched my son die in my arms and found the strength to perform CPR on him; not once, not twice, but several times over.  I am proud of myself for being able to do what needed to be done, but I also cry and my heart aches when the memory of those moments come.  While the memories will forever be etched in my mind, I hope that someday my son will know just how much I truly love him.  He may carry the physical scars, but I will always carry those emotional scars endured through our journey.  I know I will never be the same person I was before I had my son, but I am okay with that; as I know his birth has made me a better person in many different ways.

Today, here and now, is a hard part for me to write.  In my heart and from the beginning, I knew there would be a possibility of some neurological damage due to Brandon being born early and suffering the extent of blue spells that he did.   I saw, but I hoped and I guess its hard when it feels like that hope is shattered.  I ask myself everyday “Why is it so hard for me to accept this road, when I knew it was there?”.   Who knows; perhaps his neurological issues have nothing to do with his medical complications but may be a heredity factor.    I think this is what scares me the most; the unknown.  Perhaps, the fear of not being able to help what I do not understand myself.

So, I find myself, yet again, going down an unknown path; however, what is new to me is questioning whether I am or am not making the right decisions.  I hope someday, as we embark on this new journey, that I will be able to once again write that I am proud of my strength and courage for helping my son through.  But truth be told, at the moment my heart is breaking as I try to figure out how to bring myself through yet another unknown journey. While my emotions tend to get the better of me most days lately, I am still holding tight to ‘faith’ and ‘hope’ to carry me through.

And so my friend I ask “How are YOU?”.   My hope is that where ever you may be or whatever the situation may be for you; that you are holding tight to hope and faith too.

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When Kaelin passed, this is what people remembered: His smile and how he embraced the joy and love of life – by Nora; Kaelin’s mom

Today’s post will be brought to you in three parts as we remember Kaelin.  His mom, Nora, shares a powerful story in loving memory of her son.

The Beginning

I am Kaelin’s mother. I guess I’ll share a little about what my little trooper has had to endure in his short life of 2 years, 9 months, and 10 days.

Becoming pregnant was not on my agenda back in April of 2005.  I was dating the father but both him and I both knew it wasn’t supposed to be long-term type of relationship. I was devastated when I found out I was pregnant because I would be alone raising this child. I was scared that I would be a horrible mother; I was worried that I would not be able to give this child a life that I would want it to have.  At 10 weeks I came to terms with the idea of having a baby and started to plan my life ahead, making sure that baby and I would survive and have a great life.  I became excited and looked forward to the day my child would be born.  My first ultrasound at 10 weeks approximated my due date to be November 28, 2005.  My younger brother was excited because his birthday was on the 26 and he wanted the baby to be born on his date of birth.

My pregnancy experience was great.  I had no morning sickness and no cravings, but was a little on the tired side and was putting on the weight a little quicker than I thought I would.  During my 18th week I had another ultrasound completed; this one was for anatomy purposes and to check for any problems.  That day I found out I was having a boy.  I didn’t receive a call from the doctor regarding the results so I called my nurse to make sure that everything was as it should be.  The nurse calmly told me everything was good except for the fact they could not see a stomach bubble, but not to worry about it.  Being so trusting I took her words and didn’t think about the missing stomach bubble again.  My pregnancy continued to go on without any difficulty except for the amount of weight I was gaining and for huge belly I had.

Looking back at my pictures I looked like I was ready to give birth when I was 7 months pregnant.  My doctor was not concerned.  On Monday, October 10, 2005 (I was 33 weeks and 2 days along) I was at work, I had sat down and felt a little fluid come out from down below.  I was petrified because I thought I was having a leaky bladder.  Boy was I wrong.  Two days later I had my usual OB/Gyn appointment and nonchalantly mentioned this leaky bladder that occurred throughout the day for the past two days.  The doctor looked at me strangely and asked, “are you sure it was urine?”  I had no idea.  They tested for amniotic fluid and it came back positive and was told to go straight to the hospital.  “But, but, it’s not time, I need to go home and get things, I need to get someone to drive me in, I need to make phone calls, etc….”  I was about to freak out.  The doctor gave me one and half hours to go do the things I needed.  This was not much time because I lived 30 minutes from the doctor’s office.   I was not in labor so I thought I had nothing to worry about.  I was admitted to the L&D ward.  Blood and urine was taken.  Steroids and antibiotics were given.  I was hooked up to the baby monitor for an hour, and then sent off to the ultrasound.  Back in my room on L&D, I was just getting comfortable and chatting with a friend that drove me in.  Within moments of returning from ultrasound 6 doctors and my assigned nurse started to crowd their way into the small curtained-off area around my bed.  My jaw dropped; there must be something wrong I thought.  And there was.

The head doctor started off by telling me that what they found or should I say didn’t find on the ultrasound.  They could not see a stomach bubble.  They reviewed my previous ultrasound to compare.  They also mentioned that I had too much amniotic fluid which is why I was starting to leak.  The amniotic sac had a tiny tear at the apex caused from the tremendous pressure from the condition called polyhydramnios.  They gave some possible diagnosis such EA/TEF, in which I had absolutely no idea what it was, but the doctors would not be able to know for sure until the baby was born.  Because I was not going into labor they transferred me to the maternity floor for observation and to wait for labor to begin.  Well it didn’t happen.  On October 17, 2005, I was told that they would be inducing me first thing the next day.   Excitement and fear overwhelmed me.  I was finally going to meet my infant son but so scared about what I would see.  The next morning,October 18, 2005, I was induced and took all day for anything to happen.  Finally after 12 hours of Pitocin and the complete rupture of my water labor began.  One hour and 15 minutes later at 8:15 pm Kaelin Joseph Andrew was born.  The NICU team took a quick look at him and then allowed me to hold him for 2 minutes before they rushed him to the NICU.  I did not hear a word about his condition or anything at all for 2 hours.  Finally, when they were transferring me to the maternity floor they allowed me to go into NICU and go spend a little time with Kaelin.

Kaelin was born 6 weeks early weighing at 4lbs 5 oz. Within hours after he arrived and after multiple tests, they confirmed he had Type “A” Long Gap (5 vertebrae) Esophageal Atresia.  He had so many tubes and wires connected to him, but he was peacefully sleeping.  The first days were quite a blur to me.  So much was happening so fast.  A few days after Kaelin was born I noticed his head moulding was not receding.  The doctor performed an ultrasound on his skull and confirmed that it was not moulding from the birth process but was Sagittal Synostosis the fusion of the sagittal suture in the skull prior to birth causing skull and brain deformation.  This issue I was told could be dealt with at a later date.

Nothing prepared me for what the future would hold.  I doubted my own capabilities of being able to be a single mom with a child with so many medical obstacles.  I was extremely scared and blamed myself.  How a child could be born like this, what did he ever do wrong to deserve this?  I shed many tears.

Part 2 of  Remembering Kaelin to be posted tomorrow 

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Happy Birthday Philip!

Today is a special day!  Happy 3rd Birthday Philip!   

Glenndon, Philip’s dad, is sharing their journey of EA on the date of his birth.  As some of you may know, Glenndon is also the liaison for our Bridging the Gap of EA/TEF:  Canada Facebook site.

Philip’s Journey

Today we are going to share the story of our son Philip.  He was born on the 5th of January 2009 in Halifax Nova Scotia, Canada.  He was five weeks early and born with Type A Esophageal Atresia.  The gap between his esophagus and stomach when he was born was about 2.6cm.  After he was born, his surgeon felt he was too small to attempt a repair right away and that we should let him grow.  In the meantime, we had a feeding tube placed and he constantly had a repogle to keep him from aspirating.  We spent the first couple of months in the NICU, before moving to our home on 7-Link (the Medical, Surgical & Neurological Unit in the hospital).

At the three-month mark, Philip went in for his first repair.  This surgery lasted over six hours and was not a complete success.  It turned out the gap had grown farther apart to 4cm.  Unable to properly connect both ends, the surgeons stretched them until they just touched.  Philip spent just under two weeks in the PICU.  On Easter Day 2009, Philip puked!  This meant his esophagus had grown together and formed a hole.  From there it was only a matter of time before we got him home in May.  The next year was spent travelling back and forth from home to the hospital.  We had feeding tubes placed, bowels fixed and many dilatations.  (To this day, he has had 41 dilatations).  By the end of the year, it was decided to perform a resection and try to fix the esophagus better, because it continually narrowed.

In January 2010, Philip went into the OR for over eight hours.  After his recovery, over the next year the same problem occurred – his esophagus kept narrowing.  After a year of trying to keep it under control, the surgeon felt the acid in his tummy kept damaging the stricture, causing it to create more scar tissue.  This led to Philip getting a full Nissen Fundoplication in January 2010.  This ended up being just what he needed.  Not long after this surgery, everything clicked and he began to finally eat.  Unexpectedly, he acted like any other normal toddler, and began having problems with his tonsils, so out they came too.

Besides Esophageal Atresia, Philip’s other condition has to do with his eyes.  At first diagnosed with Ocular Albinism, now they have said he has ‘likely albinism in his eyes.’  The only outward symptoms we can see is a slight nystagmus (shaking of his eyes) and a slight head tilt so he can focus in on an object.

To date, Philip is a smart and happy little boy.  He relies very little on his feeding tube, and we are hoping to get that and his Port-A-Cath removed sometime in the next year. We want to thank everyone at the IWK Health Centre in Halifax Nova Scotia for everything they have done for Philip and our family.  In particular his surgeon, Dr. Natalie Yanchar, and all the nurses on 7-Link.

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