Going blue

24/08/09

Hello,

My daughter, the youngest of six (my eldest daughter having died of Aicardi Syndrome, another rare anomoly) was diagnosed with EA when she was a day old.  We have once/twice yearly vists to the cardio and, touch wood, they seem to be happy to keep an eye on her.  She has moderate regurge through the tricuspid valve and also has a hole in the heart, which they prefer to leave as they feel it relieves some pressure from the valve. She will be 8 in September and although we have always had episodes of turning blue – most noticably round the mouth and under her eyes, it seems to becoming more often.  So far the cardio has been happy again, just to keep an eye on this.  I, however, am feeling more anxious.  Has anyone else had experience of this.

Thank you

Susie

P.S. What a marvellous site, thank you

Hello,

My Daughter “Hannah” turned 5 in February.  We were diagnosed with Ebsteins at our 20 week pregnancy Scan.  We were recommended to terminate our pregnancy.  Hannah has mild Ebsteins with moderate tricuspid valve regurgitation.  Hannah goes to the cardiologist several times a year and is about to go again to have a stress test done.  She is just like any other normal 5 yr old but does tire quite easily.  I know it can be daunting awaiting the birth of a bub not knowing the outcome.  Hannah was taken straight away to the ICU and given a drug to keep the shunt open while her oxygen levels stabilised.  She was fine to move to the ward after 6 days.  So far she has not had to have any surgery but this may change in the future.  The cardiologist has advised us not to let her participate in any competitve sports which is a big challenge as Hannah strives to be the best at everything she does.

At the end of the day she is just a normal kid.  We tell her all the time the truth about her condition and she knows her body better than anyone else does.  She knows when she gets palputations to stop and chill out for a while.  I fully believe in telling kids all about their illnesses so they can learn what is important.

We feel lucky to have Hannah.  There are many other conditions out there that would have taken her from this world by now.

Have a nice day.

Gaylene from Oz.

Experiences

27/08/09

My name is Darlene Staimpel and my son John was born with Ebstein’s Anomaly.  I had no idea until he was born (March 2005).  That was one of the scariest days of my life.  I gave birth and then the nurses took him.  I never saw him.  Everyone left me in the room by myself while they were trying to figure out what was wrong.  After 20 minutes my husband walked in my room and said that “something” was wrong and they have literally every doctor and nurse in the hospital helping him.  They stuck him over 100 times that day just to get an iv started.  A larger hospital’s transfer team came to take him.  I got to touch his hand and foot but never saw his face or held him until the next day.  I had to stay in one hospital while my newborn baby, so sick, was in another hospital 45 miles away. I found out later that night that the transfer team had to revive him twice. 

Dr Chris Knott-Craig

The doctors ran several tests and diagnosed him with Ebsteins.  The hospital released me the next morning to be with John.  I remember seeing him for the first time and I was so scared. He was so blue he was almost black.  We spoke to his cardiologist and he said that they would have to transfer him to yet another hospital because they could not give him the proper treatment.  The hospital team Lear jetted him to a larger hospital where he stayed 3 days.  We were told again that they could not help him.  The staff, my husband, myself, and our family and friends made calls to every hospital in the US and NO ONE could or would help.  By the grace of GOD we found the only surgeon in the WORLD that has perfected Ebstein’s Anomaly in newborns.  He agreed to take our son if he could make the flight.  John had been intubated and was now grey and pretty much lifeless. We flew 8 hours to find Dr. Christopher Knott-Craig.  Our first meeting he explained that he wanted to wait until John was a month old before he could do the surgery. He said that he was way to sick and his survival rate would be less than 10%.  At this point John was in complete renal failure and heart failure. He also had a small brain bleed. Taking the advice of Dr. Knott-Craig we agreed to wait. 

The next morning Dr. Knott-Craig called us in and said tomorrow morning is the surgery, we have no choice.  This is his only chance for survival.  That was a hard day for myself and family.  Later that night, Dr. Knott-Craig said it would be a great idea to express our love to our son, make peace and say our goodbyes. That was the hardest thing I have ever done.  The next morning Dr. Knott-Craig performed the most AMAZING surgery on John.  He had made it off the by-pass and was doing great.  From that moment on, John never had a set back or hick-up.  He grew to become an extremely strong, smart, beautiful, tough and hyper 4 year old. Dr. Knott-Craig is now in Memphis, TN and I HIGHLY recommend him if anyone needs this procedure done.  Because of Dr. Knott-Craig and his skills, my son will need no future surgeries for Ebsteins.  HE IS CURED!!!! I would love to say to any parent going through this right now, I know what your going through.  I know the pain, heartache and deepen sadness and helplessness you feel. God will see you through as He did my son and my family. My email address is staimpeld <at> yahoo.com if anyone would like to talk.