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
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Our little Bekkah is two and we are having the same issues. She has WPW also and her ebsteins has just been upgraded to moderate from mild when she was born. I feel like our Doc is sometimes a little too conservative. I don’t know. I guess I just want her to have a normal life. Maybe I should get a second opinion.
Katie
Comment by rebekkah — October 19, 2009 @ 3:09 am
I have a daughter charlotte that is two. She has Ebsteins and wpw as well. She turned blue a lot the first year of her life. Her feet,hands,lips,and module skin like blueish spots on the arms and legs. The last year has been better. I think they get blue like that b/c they don’t always get enough oxygen because the heart is working harder. I also have noticed the blue is if she’s having SVT or just sick even a cold will make her turn blue. Also I’ve discovered she has a feeding issue which is getting better b/c of therapy. Because the way she swollows liquids it can get into her lungs or something like that. So I am thickening liquids. Less blueness now that I started doing that. I’ve learned to go with my gut. If u feel something is not right with your child the mother is usually right. That’s how I’ve learned. Always get a second or third opinion. If I didn’t do that my daughter wouldn’t be here today.
Comment by Courtney — October 22, 2009 @ 2:49 am
My son has ebstein’s with moderate to severe regurgitation and a VSD (hole) but he also has l-transposition which means what pumps to his lungs should pump to his body and vice versa. I have never really “noticed” him turning blue but after reading this, I’m going to look at that more closely. My biggest thing is reading the swallowing of liquids comment. My son seems to get strangled quite easily when drinking liquids so I’d like to know how you brought this to your doctor’s attention and what tests they had to do to determine it was a swallowing issue?
Comment by braxton21 — October 29, 2009 @ 12:39 am
We have just had our latest check up and I am onfused and concerend to say the least; He explained that the blueness is when some blood goes through the hole to the other side. He showed us how the operation is done, but said at the moment she is looking good and doind well so will leavethe procedure for the moment. However, he then went on to say that we have to pay attention to the fact that if she is injured or travelling, we have too be especially careful for blood clots as if these form they can – if I understoood this correctly – go through the hole and up to the brain. I feel this is a serious issue and therefore feel that maybe the plug should be filled. To add to the confusion, we have been told on previous visits that plugging the hole would put added pressure on the tricuspid!!! Arrrgh – Has anyone else been told these things?
Comment by susie carnegie — December 16, 2009 @ 12:20 pm
Hi Susie
My son was diagnosed at 2 days old with severe ebstein’s and and an ASD. Like you we told that the hole acted as a safety mechanism and allowed some blood to bypass the heart and recirculate when he was under pressure. He used to be blue esp around the mouth when, for example, he had a cold and was under the weather. He had surgery, at Southampton Hospital, when he was 9 yrs (5 1/2 years ago) to reconstruct and move the valve and to close the ASD and is on great form, playing lots of sport, despite still having a moderate regurgitation and therefore not having the stamina that he would like. I hope you are feeling better about it all now – I find that the check ups still make us “wobbly” for a few weeks afterwards as something you have learned to live with and be confident about suddenly becomes a horrid big issue again.
Best wishes
Emma
Comment by Emma — February 1, 2010 @ 6:59 pm
Hi, My name is Linda, I have a daughter named Kasey. She was born with Epsteins. They took her 90miles away from me, no explanation, nothing. She is my heart and joy. She stayed in ICU 8 days. We saw the Cardiologist every 6 mths. She was doing fine so I thought. On Easter Sunday when she was 18 mths old, she was admitted into the hosptial with pnenomonia. She was there 8 days. They couldn’t find out why her heart rate wouldn’t reach over 85. They thought she needed a breathing machine, which they put her on. We were able to leave cause it made her heart race and she was hyper and it went to 100. I was just glad to get out of the hospital. Try confining your 18mth old in bed with oxygen for 8 days. Anyway, I called her Cardiologist who saw us within days and she was diagnosed with a hole in the heart. They scheduled an appointment a mth later to close the heart. I was on pins and needles. She seems to be doing fine. I hope. You never know. She still has the purple in her eyes. I still wake up at nite checking to see it she is breathing. You never know.
Comment by linda everitt — July 15, 2010 @ 4:41 am
My daughter, Beth was diagnosed within the first few hours of life with a murmur which was then determined the next day to be EA of a moderate level. She is 11 1/2 now and although she continues to have moments of blue tinges around her lips, fingers, toes and gets cold very easily, one would never know she has a heart defect. We go to Johns Hopkins yearly to meet with the Ped. Cardiologist who is closely monitoring her. Beth is now smack dab in puberty which I understand to be the next hurdle to jump through as with the hormonal changes to her body, her heart could be affected. We have been blessed but like any parent with a quiet health situation, it is never far from my mind. It has become more difficult in monitoring her as she is spending longer periods of time with friends and going further away from home. However hopefully our explanations of how she should feel and may feel will help her if an emergency comes up. I am just glad to know that other parents out there feel some of this fear as well. It can be unnerving. I guess we are in it together!
Blessings-
Jennifer
Comment by jennifer — August 18, 2010 @ 8:47 pm
Mu daughter Isha was diagnosed with EA while I was pregnant. She was born blue and stayed in ICU for 8 days. Her oxygen level was at 96-98 for her fist year. Then she had the PDA closed the day after her 1st B-Day and the oxygen level dropped to 86-88. she’s now 5 years old and although she’s never had a lot of problems her oxygen level keeps dropping. Now she’s at 79-81. Cardiologist wants to do open heart surgery to correct the valve, close the hole in the upper chambers but that’s a frightening thought.
Comment by Maria — October 27, 2010 @ 3:12 pm
@Maria
Run to an experienced EA heart surgeon. O2 at 79 is extremely dangerous….. When my wife was diagnosed with ea, svt wpt and she just had our son and was in that range. People asked me what I was doing getting her pregnant (she was undiagnosed).
Mayo clinic is the most experienced in the us at 550 operations. This is the second repair for my wife. She’s 38 and had the first one 11 years ago….
The second one will be at Mayo… We’ve had two healthy children. One before and one after her repair.
Post a message if you have any questions.
Comment by Stephen — November 14, 2010 @ 4:33 am
My son Dalton was diagnosed in utero at 5months. The prognosis was very grim. We were told that he would never even take a breath. He was born on April 1. He was God’s joke to the Dr’s, letting them know that they could only do so much and that he was in control. That was in 1995, my beautiful heart baby is now 16 and is just now starting to have symptoms. He gets fatigued and wore out more often and his pulse flies through the roof if he tries to run. But until this year he has been playing high school football and acting normal. The Dr’s are trying to hold off another 10 yrs before surgery. He has moderate EA and his heart is slightly enlarged. I know that things will workout and I pray for everyones heart baby!
Comment by daltonsmom — July 5, 2011 @ 3:55 pm