Grandson aged 9 with enlarged heart, leaking valves and leaking behind left eye

[karl4thewhites]

Our grandson aged 9 has been having chest pains during the night, breathlessness on exertion and when taken to the optician our son was told that he had a leak at the back of his left eye which has caused a major loss of sight in that eye, he was referred to the hospital to see if there was an underlying reason, today they have been told that his heart is enlarged on one side and that he has leaking valves, he has to see a heart specialist but the wait is 12 weeks, we are all terribly worried about him, what is the prognosis for this please, will he need open heart surgery? They have told my son that he must not exert himself (he is very sporty and plays a lot of football) until he has seen the heart specialist, 12 weeks seems such a long time to wait. Can you give any advise as to what the cause and cure? if for what he has wrong with him. Thanks you in anticipation.

[Marie M Gleason, M.D.]

Dear karl4thewhites:  Aside from cardiac disease, one also has to think about asthma with night time shortness of breath and exercise related shortness of breath.  Another cause of night time "chest pain" is actually gastroesophageal reflux, which can be quite severe.  It sounds like your grandson may have a congenital valve leakage.  If surgery is required, many normal activities may be resumed, but if a valve is replaced, contact sports would not be recommended, particularly football. I cannot comment further upon his activities.  You should discuss this with his primary doctor now, and with the cardiologist/surgeon after he has a thorough evaluation.

[Marie M Gleason, M.D.]

Dear karl4thewhites: this sounds like an unusual combination of issues.  It is uncommon for an otherwise well 9 year old to develop a visual loss due to bleeding into the retina (which is what it sounds like you are describing). One has to think about prior head or face trauma (you say he is “sporty”).  It is difficult to directly link that to an underlying cardiac disorder.  There are rare connective tissue abnormalities where the tissue that makes up the blood vessels is weak, and this could potentially be an issue both for the eyes and the heart valves and blood vessels.  Or there could have been a clot or some other material that blocked a blood vessel in the eye and led to hemorrhage.  

With regards to the heart enlargement, the symptoms vary depending upon the side of the heart that is involved (the right side pumps blood to the lungs, while the left side pumps blood to the body), and what valve(s) are leaking. When the left sided valves (mitral or aortic) are involved, it can affect how much blood flow goes out to the body.  This often gives symptoms of shortness of breath and exercise intolerance. Sometimes valves leak due to congenital problems (abnormalities present at present at birth), but sometimes valves can leak after a heart valve infection (called infectious endocarditis) or with inflammation of the heart (as in rheumatic fever).  Your doctor will need to know if your grandson has been sick with fevers, rashes or joint pains in the last few months, and if the family has been told that he had a heart murmur.

Obviously, his prognosis depends upon the valves involved.  Medication may be indicated initially, but sometimes surgical intervention to repair or replace leaky heart valves is required. He needs to see a heart specialist to make these determinations.  You should follow the advice of your primary physician and have your grandson avoid excessive exercise, particularly isometric activities such as wrestling and weight lifting, push ups, pull ups and chin ups, which all place more stress upon leaky valves.  Finally, if he has any chest pains, dizziness or fainting, or complaints that his heart rate is skipping or racing, then he needs to be taken to a hospital emergency room for evaluation.

[karl4thewhites]

Thank you.

[karl4thewhites]

Thank you for your prompt response. Our grandson has not been ill or had any fevers, his Mother had pre eclampsia at birth and he was very sick on life support for some time, during this time he was given an overdose of anti biotics and his parents were told that this may cause some problems to his health in the future so maybe it has something to do with that I don't know. He suffers breathlessness after exertion and often during the night while asleep. He also gets severe chest pain during the night and becomes quite distressed with this. My son has been told that he must not play football but can have normal activity, (trampoline etc) do you think this is wise? He is very active, very small for his age and slim built. He will be seeing a heart surgeon within the next 12 weeks, they can't get a quicker appointment than this. Thank you once again for your informative reply. If he does have to have surgery to repair the leaking valves will he be able to resume a normal life afterwards, ie football etc? Thank you.