Pediatric Heart Expert Forum
Confusion about congenital heart disease operation
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Confusion about congenital heart disease operation


We should like to seek your expert opinion sir, for a 3 months old baby boy, who has been diagnosed with acyanotic congenital heart disease ASD.

Here is a summary of a test result.
1. Pulmonary valve as boming and thickend.
2. Inter Ventricular Septum : Intact, Paradoxical.
3. Inter Atrial Septum:  ostium secundum ASD - measuring 7mm with L - > R shunt.
4. Severe pulmonary valvular stenosis (85 mmHg) with  post stenotic dilation.
5. Dilated right atrium and right ventricle
6. IVS paradoxical
7. Normal bi-ventricular function
8. No VSD/PDA/Coarch
9. Normal Left aortic arch. No thrombus /vegetation/pericardial effusion/PAH.

One cardiologist tells us this is an urgent case and the baby must be operated right away. The operation is feeding a tube in the baby's thigh with a balloon and try to close off the valve.

Another cardiologist together with the child pediatric tell us the baby is 3 month old, and must wait for any operation until the baby is at least 12-18 months old.

The parents are very confused, worried and stressed out with no idea what to do.

We desperately beg you sir, for your kind opinion about this baby's case. Do we go for the operation now, or can it wait until the baby is older about 1 year old. Can the operation be done now and what are the complications. And can the ops wait until he is at least 12 months and what are the complications.

We await patiently for your prompt response sir, and we thank you.
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773637_tn?1327450515
Dear MASP,

It sounds as if this baby has, as you say, severe valvar pulmonary stenosis.  Unless there is something else that is not normal, it sounds as if this should be treated now.  In experienced hands, cardiac catheterization, which the first cardiologist describes, is quite successful.  A catheter is placed in a vein in the leg and advanced into the heart.  The pressures can be measured and pictures can be taken of the heart.  Then, a special catheter with a balloon on the end of it is placed across the valve.  The balloon is inflated and the valve is opened, with relief of the obstruction.  The balloon is then deflated and the catheter is then removed.  This is commonly done at this age, and even younger.  Although I cannot tell from all of the information I have, there seems to be absolutely no reason to wait for this.  It will only increase the risk for this child’s heart.  The complications associated with this, besides bleeding and infection, can be perforation of the heart, in which a hole is inadvertently placed in the wall of the heart or the pulmonary artery, as well as over-dilation of the valve, which can relieve the obstruction but then leave the valve with severe leakage that ends up causing problems later.

I am somewhat concerned that, based on the varied responses of your cardiologists, this baby may not be at a center that is used to doing this.  I would recommend that this baby be sent to a center where this is performed on a routine basis and where they are used to doing this, so that there is both an experienced interventional cardiologist as well as a pediatric cardiac surgeon on backup for this case.
6 Comments
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Avatar_f_tn
Hi there. I know im not a doctor, but just wanted to give you my view on it. I had a son with HLHS and he would have dies within the forst week of like if he didnt have open heart surgery. His second surgery was at 6 months to give him time to heal from the first surgery. I dont know all about what your talking about, but the one thing I do know is with the heart, usually the sooner its done, the better. If they wait too long, the heart muscles can become damaged and enlarged and weaker making the surgery and recovery more difficult. But like I said, I dont know much about your sons condition. Have they said its a dangerous condition? Are you seeing a cardiologist who is specified in pediatric cardiology? Are you going to a hospital FOR children who is better equiped and more knowledgable about you sons condition? The bigger centers are the best. Im sorry if this doesnt help you at all. I just wanted to give you my take on it. I wish you all the luck in the world.
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Avatar_m_tn
To Apeddle, Thanks for your response. No pediatric surgeon, Just cardiologist.   Its just confusion from doctors. Perhaps if a pediatric cardiologist can response to this please.  Thanks
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Avatar_m_tn
Dear Dr Boris, Many thanks for your kind and supportive response. So sorry for not responding sooner.

We have taken the baby in question, to be seen by two other cardiologists, an interventionist and a pediatric cardiologist.

The echo readings obtained were very different by each one of the doctor. The pressure ranges were between 35 to 90. They put the big difference in the reading to the location where the reading was taken, the gradient used, and  when baby was awake and asleep.  

Both doctors have assured us this readings can be taken as normal and nothing to worry for the time being. They do NOT recommend to go for a catheter and a ballon now.

They will monitor the baby pressure regularly and also wail until he is around 12 months old. The doctors explained to us the catheter tube size is bigger than the baby's vein.  

We should be very grateful if you may add your useful advise, and we thank you very much for your time and support.

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773637_tn?1327450515
I cannot comment further on this, as the interventional cardiologist has more information than I do regarding this baby.  I will say that, assuming the baby was born at term, the risk for cardiac catheterization, including for the femoral vein with regard to the size of the catheter and sheath, is low in institutions that perform this procedure quite frequently.  It should not be a reason to delay the procedure.  The reason to delay the procedure should have to do with what the actual amount of obstruction is across the valve.  If the amount of stenosis is low and there is no evidence of elevated right ventricular pressure, then it is reasonable to wait.  If it is elevated, then it requires intervention.
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999780_tn?1263675571
Hi there
My son is 2 and had his first heart surgery at 8 wks old.He had the angioplasty that you are talking about.He has aortic stenosis and abnormal mitral valve.His pressures we are 72 for the mean gradient.If he had not had the surgery at that time he would have dies a week later from a heart attack.Not to scare you but that is whay happened to us.
He stayed over night in the hospital and then we went back home the next day.he unfortunately had to come back 2 weeks later for another surgery.we never heard that his veins were too small.I hope you have answers that you are happy with.
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773637_tn?1327450515
Jeffrey R Boris, M.D.Blank
The Children’s Hospital of Philadelphia
Philadelphia, PA
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