Feeds:
Posts
Comments

10167924_10153140274806718_979895640252057223_nDo you ever have a hard time explaining your child’s condition to them, to other parents, to school teachers and/or friends?   The book “An EA/TEF Story Inside and Out” by Vanessa Munsch is a wonderful resource to use.

An “EA/TEF Story Inside and Out” is geared towards explaining what EA/TEF is.  It incorporates ‘sharing time’ into its theme and can be used as a conversation starter to talk about how EA/TEF affects your child specifically.

This book is a great resource for family members, local hospitals, doctor’s offices or schools.  Proceeds go back to help Ea/Tef children worldwide and is available for sale at www.eatefbooks.com.  The book is available in American and British English (TOF), French, Italian and Spanish.

Host an EA/TEF “Sharing Time” at school

001 invite (1)For Awareness month, I am going to print out some “Admit One” pictures, attach them to Vanessa’s book and distribute to my son’s school and pediatrician offices!

Advertisements

“Great thoughts speak only to the thoughtful mind, but great actions speak to all mankind.” – Theodore Roosevelt

Social media can be such a powerful tool in connecting people who are looking for others going through similar situations or just simply looking for thoughts, suggestions and ideas.

In 2007, when our son was born with EA/TEF there were very little resources on the internet regarding esophageal atresia/tracheoesophageal fistula.   It was not until 2010 that we met some amazing fellow EA families online via social media.  It was an AMAZING feeling to be able to meet some of these families face to face and know we were not alone in our journey.  Our group was small at first, with families from Massachusetts, Connecticut, Rhode Island, New Jersey and California.  It is these families who helped inspire and create “Color It Periwinkle to raise awareness for esophageal atresia”.

The birth of this awareness campaign started with these families in 2011 and has continued to grow 6 years later with more amazing families throughout the world!  The campaign and ribbon we created has special meaning to our families as we continue to grow.   It is a tie that binds us together as a community  The colors we chose have specific meaning:

Periwinkle signifies eating disorders, esophageal cancer and GERD.  All items for which EA/TEF children can be at risk for.

The white signifies the innocence of our children.

The passion these families had, and continue to have today, is always such an inspiration to me.   You are all an inspiration everyday and I thank you for everything that you do!  THANK YOU!

Leave a note of gratitude for the person(s) who inspire you!

On the day you were born……

We were told you would probably never eat by mouth.

We would be lucky if you survived through the week.

That our lives, as we know it, would be changed forever……

On the day you were born, you proved to be a fighter.

On the day you were born, you changed our lives for the better!

“Every 4.5 minutes in the U.S. a child is born with a birth defect”

In 2012, Utah parents of children with birth defects in collaboration with the National Birth Defects Prevention Network created a powerful PSA regarding “On the day I was born”.  The PSA was funded by a private organization.  www.endbirthdefects.org

7081_01032013131058

On the day I was born PSA

January is National Birth Defects Prevention month and we use this month to raise awareness regarding EA/TEF and the numerous birth defects associated with EA/TEF.  To Learn more visit the National Birth Defects Prevention Network.

I have found over the years that as a parent of a child born ‘medically fragile’ with complex medical needs; at times, communication can breakdown among family and friends.  I think it is equally hard for family or friends to understand that the ‘normal’  we use to share now carries some additional responsibilities that most parents of healthy infants may not and hopefully will not have to experience in their lifetime.

Trying to meet everyday expectations; as well as, meet the medical needs of your medically fragile child can put an unsurpassed amount of stress on mom and dad.   I must admit though, that due to our stress, we may not communicate this to you, our family and friends, as well as we should.   So for all of us, as we navigate through a newfound world and try to become accustomed to our new everyday ‘norm’. I ask for

 just a little understanding please…..

I think that the number 1 question that tends to draw battle lines where none should be drawn is the infamous:

Why are you not coming to visit us?

Most often, when elicited with the infamous “Come see us”, it can be a very stressful question to ask.   Yes, it is a very simple question, but because we are all ready stressed, our response may not come out as it should.  Due to this, we tend to elicit the infamous response of “You don’t love us, you don’t want to share your child, you do not want to be a part of our family”.

So to all the family and friends’ out there, please know that this is not the case.  And most often this is where we ask for just a “little understanding please”……….

There are some factors that need to be considered and perhaps by coming to visit ‘us’ we can help to teach you some of those factors.  For example:

1.  A simple visit to someone’s house requires more than just the packing of a diaper bag for us.   There are meds to pack, special foods, suction machines, 02 stat monitors if needed and for some children who may have a trach or be tube fed, it requires packing all the necessary medical equipment that may go with it.

2.  Because our children are ‘medically fragile’, we also have to be careful of germs.  This is a consistent worry of ours.  We all ready live in the hospital more often than we would like to, so whatever we can do to prevent another hospital trip, we will do for the sake of our child.

3.  Lack of sleep by both parents is a constant, and not just because our child is an infant.  There are strict medical schedules to keep to.  Just because we are no longer in the hospital it does not mean that things are back to ‘normal’.   It’s not just about waking up every 2 hours to feed your baby.  There may be g tube feedings, hourly meds, nebs every 4 hours, suction every 15 minutes or so, if not more.  So please know, when we say we are tired and max’d, we REALLY are!  What we really want is someone to say “Hey I’m on my way, I want to learn your little one’s needs so you can go take a nap”.

4.  Isolation, isolation, isolation.  Because we need to take care of the aspects of our medically fragile child we can feel so isolated as family and friends tend to withdraw and become very angry vs try to learn and understand what our daily schedule now contains.  So please, don’t isolate us anymore than we all ready feel.

5.  Know that we really DO want to go out, but it is just not as simple as we wish it to be.   We need to make sure we find someone who can meet the medical needs of our child while we are out.   It’s not just about separation anxiety for us; it’s about whether or not our ‘medically fragile’ child will be OKAY when we do get back.

6.  The financial constraints are also enormous and are on our minds everyday.   Most families are two ships passing in the  night as they try to ensure that they are meeting the financial needs to pay for the continuous flow of medical bills for our child.  Most often, we just can’t afford that quick lunch or cup of coffee.  However; in turn, also leads back to #1 trying to pack all our child’s gear or #5 in trying to find someone who can care for our medically fragile child.

7.  Most important, we tend not to take care of our needs but put our child’s needs first.   Bring us a meal; as odds are, we took care our little one but not ourselves.  Sit with our little one so we can take a shower or run to the store to get milk; odds are when they went down for their nap, we were busy preparing the feeds or medicines for the next round.

So, yes, for us it seems like a never-ending cycle; which at times can lead you to feel as if we are not allowing you to be a part of our lives.  But know that we do need you, we just need you in a different way; and so does our child.   We simply ask for a little understanding please….

(1)TE” stands for tracheo-esophageal fistula. About 70% of babies with VATER have this problem.

Shortly after our son’s diagnosis of EA/TEF and repair, we were given an in hospital fact sheet about EA/TEF.   As we researched on the internet and read through the print out we became very concerned as it stated that most often children born with EA/TEF can have other birth defects which fit the criteria of VATER/VACTERL association.   We immediately asked our son’s team if he had yet been tested for other birth defects that would fit this pattern.  Initially, we were told that visually he did not appear to have other aspects and they would not do further testing.  However, as I am sure you can understand we did not feel comfortable with that decision.  We brought the article to the head of the team and from there it was determined that they would set up testing to rule out all other factors that could be associated with VATER/VACTERL.

(1)VATER is rare, but has been reported worldwide. Exact incidence can be difficult to determine because of different criteria for diagnosis. Some studies consider two or more VATER features enough to make the diagnosis. Other studies require at least three features to diagnose VATER. Also, infants with features of VATER may have other genetic syndromes such as trisomy 13, trisomy 18, Holt-Oram syndrome, TAR syndrome, and Fanconi anemia.

The following were defining symptoms under VATER associaton:

1.  V:  Vertebrae

2.  A:  Anal

3 and 4.  T and E:  Tracheo – Esophageal Fistula

5.  R:  Renal (Kidney)

VATER was later expanded to include VACTERL:

6:  Cardiac

7:  Limbs

After testing in each area was complete, we learned that our son also had 5.  Kindey and 6. Cardic; therefore, he met 4 of the categories to fall under the VATER/VACTERL association; T, E, K and C; as well he had a facial muscle missing in his left cheek causing facial droop on his left side.  Our son’s most unique feature from the missing muscle in his cheek is that it caused a color division in his left eye (half of his left eye is brown while the other half is blue).

Healthline has a wonderful document regarding VATER/VACTERL that I hope other families will find helpful.

Footnote:

1.   Healthline/Symptoms and Conditions/Vater Associaton, Date published:  2005, Copyright:  Gale Encyclopedia of Public Health

In most EA/TEF cases, surgery is done immediately to connect both ends of the esophagus; however,  in children born with LGEA (long gap esophageal atresia; 3 cm’s or greater in length), the type of treatment and surgical method to use can be more complex.  Most often, it can require a period of waiting to see if the ends of the esophagus can grow closer together to be able to perform connection.   Below is a list of treatment methods that are commonly used for children born with LGEA:

The Foker Process

Colonic interposition

Jejunum interposition

This video touches base on the treatment methods that may be utilized.  This video explanation is very simplistic and allows for the average parent to understand the concept of each method.  As in my prior post, it is always important to explore all of your options and ask questions before  you make your repair decision.

What treatment method was utilized for your LGEA repair or child’s repair?   Please feel free to comment and share  your experience.

%d bloggers like this: