What is Ebstein’s Anomaly?
The Ebstein’s Anamoly heart condition is a rare heart defect that affects 1 in 10,000 people. It is characterized as the ventricle on the right side of the heart forming lower. This causes the leaflets that control the blood flow to be malformed. In turn, this can lead to leaking through the valve and heart enlargement.
Who Can Have Ebstein’s Anomaly?
Anyone can have it. As of this post, they have not found any common indicator that a baby will be born with this condition. It has not been linked yet to anything genetic.
There is only one link that could increase the chance of a fetus developing this heart condition. If the mother is exposed to or uses Lithium or benzodiazepines. It is not a for sure thing, but they have found that mothers that have had exposure to either of these drugs have a higher chance of their baby being born with Ebstein’s Anomaly.
How is Someone Diagnosed?
This condition has a whole range of symptoms and degrees of severity. It really goes on a case-by-case basis as to what symptoms are expressed. Some of the more common ones that can be seen are:
- shortness of breath
- heart palpitations or arrhythmia
- bluish coloring around the mouth and lips
When you go in for a doctor’s appointment, they can get your O2 saturation, do an EKG (electrocardiogram) and an Echocardiogram. The O2 saturation will tell them if your heart is producing a low oxygen level in what should be full oxygen-rich blood. The EKG will show them if your heart has any irregular beats or anything going on with it. The Echocardiogram will give them a view of how your heart is doing, if there is any enlargement particularly in the upper right side, and if there is any leakage through the valve.
A person can be diagnosed as early as a fetus still in the mother to late in life in their 60s or 70s. Again, it is on a case-by-case basis. If the person is displaying no symptoms, are able to live their life normally, and have no other health concerns, it is possible they can go late into life before they ever learn they have this condition.
On the other hand, if you have shortness of breath, irregular heartbeats, or blue coloring, you should go see a doctor and get checked out.
There is no fast and quick way to treat this condition. The doctor will decide on the best course of treatment depending on the severity, the age of the patient, and what symptoms are present. This can range anywhere from waiting and watching to see how your body does to recommending open heart surgery to fix the faulty valve.
My personal Experience
My son was diagnosed with this condition on a whim. After we were released from the hospital and my milk started to come in, he started to have difficulty breastfeeding. On the checkup visit for him to see if he was getting enough to eat, the nurse happened to check his O2 saturation. It showed that he was in the low 70s. The doctor quickly came in and exposed him to some oxygen from a tank. His O2 saturation quickly went up. She directed us to the Emergency Room immediately (it was literally across the street).
When we got to the ER, they hooked him up to oxygen and did all the normal minor tests. Several hours later he was transferred to a children’s hospital that was 2 hours away. When we got there, he was given more tests including an echocardiogram. This showed the pediatric cardiologist that his tricuspid valve had formed just a bit lower than was within normal limits, and there was a hole in the wall between the two top chambers of his heart.
The hole, I was told, was normal for a baby his age (around 10 days old), but because of the malformed valve, it was causing regurgitation into the full oxygen side of his heart and that was what was dropping his O2 saturation. He was prescribed oxygen, monitoring by us his parents, and a followup in a month’s time.
As he has gotten older(now almost 1 year old) his condition has proceeded best-case scenario. He started with almost no regurgitation and has now got a little bit. This means that his heart is leaking just a tad, but has not gotten any worse in the past 6 months. The little hole between the chambers is almost closed and his O2 saturation has remained high for more than the past 6 months. He hasn’t had to use any oxygen, though we still have everything he might need just in case.
We are currently just waiting to see how his body and heart handle him growing up. His Cardiologist has told me that he is now a candidate for surgery, but since he is having no outward symptoms of his condition, it is not needed right away. She will be talking with Mayo Clinic to find out when would be best for him to have surgery to fix his valve.
I am on orders to watch for outward symptoms with him. These include him huffing and puffing with exertion, passing out, and difficulty eating or drinking.
While this is so scary for me to think about, I know that he is being taken care of and we will do the best that we can for him. This is a very serious condition that can present in many different ways, or not at all.
As the parent of a child who has this, I know how stressful it can be. As hard as it is, if you find yourself in this boat, you must remember to take care of yourself. If you are not well, super stressed, or completely run down from worrying you will not be able to be there for your child or whoever has been diagnosed. I know, it is one of the hardest things to do and seems selfish, but you have to take care of you. Only then will you be able to focus all your effort and attention on where it needs to go. He is my post on 10 Tips on How to Relieve Stress.
If ever you experience anything out of the norm, or any of the symptoms that I described above, please get in to see your doctor. This post does not provide medical advice. It is intended for informational purposes only. It is not a substitute for professional medical advice, diagnosis or treatment in any way. Never ignore professional medical advice in seeking treatment because of something you have read. If you think you may have a medical emergency, please call your doctor or dial 911 immediately.
Extra Reading and Support
- Mayo Clinic – Ebstein’s Anomaly
- Cove Point Foundation – Ebstein’s Anomaly
- Cincinnati Children’s – Ebstein’s Anomaly
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