Cardiologist for my premature baby

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preemie12

New member
Hi everyone,

My baby was born at 31 weeks gestation, and is in the NICU (SCBU now) for the past 7 weeks. He has a heart condition - 2 holes in his heart, one large VSD and one moderate ASD. The doctors at QE say he is stable, and is slowly putting on weight.

But I can't help but worry about his heart condition. The pediatrician says it is unlikely the hole will close on its own, and may require surgery at some stage (perhaps in the first year), but its too early now as the baby is just 1.8kg. However, the doctors are extremely busy, and even though I have requested to meet the pediatric cardiologist several times, I have not been able to meet him, as they are highly in demand.

From the looks of things, my baby should be discharged in 2-3 weeks. I would like to show my baby to a private pediatric cardiologist who can do an echo and give me a better idea of whats going on. Does anyone know of any good pediatric cardiologist who perhaps specialises in premature babies? I read on the forum of Dr. Maurice Leung. Are there any other recommendations?

I hope someone has some experience in this and show me some direction, as at QE, while they are taking very good care of my son, I am left quite in the dark. Also do I have to get the medical records released at QE - and does this take long or can I get it immediately? Thanks in advance!
 
Hi, no experience with cardiologists I'm afraid, just wanted to offer sympathy for what you are going through, I can't imagine how you are feeling and I hope you get all the care you need and that your baby is well enough to go home with you soon x
 
Would also like to offer sympathy, such a tough time, but hang in there. Our child was also born prematurely (although later than 31 weeks) and we had a few complications that required a paediatric specialist, but not a cardiologist. Our primary care paediatician guided us to very knowledgable specialist doctors. Perhaps you could give him a ring for a recommendation or referral. He is a lovely man and in our experience an excellent and caring children's doctor and willing to offer as much help as he can. His name is Dr. Richard Chiu and number is 2810 7018. Oh, you may need to get past his receptionist and actually speak to him as her English isn't good and she isn't great at dealing with non-routine requests. Best wishes.
 
I have no recommendations but I just wanted to add my support to all that you are going through right now. My little one (just turned 1) spent 4 months in NICU at QMH due to airway issues (she was not premature though) and now that I've been through NICU, I can really "feel your pain"... it's not easy... but I'm so glad that your little one will be home with you soon!!

I did want to say that although there are many flaws with the public health system here in HK, they are brilliant medically. If something is urgent, they will act with appropriate urgency. I know that as parents, that is frustrating because we want to see someone NOW, we want answers NOW... but if the hospital is not being urgent, it is a good sign that your son is stable and doesn't "need" immediate attention. (Also, if they thought he was in any danger, they would NOT release him. That's why my daughter was in for so long, she was very stable from about 1-2 weeks old, but they felt she was at risk of airway failure which could theoretically result in death, even before she had time to get to A&E - so she was kept in there more or less "just in case of emergency", not because she was sick). That said, I do think that there's no harm in seeking a second opinion from a private doctor if your insurance/finances will allow.

Also, we requested our medical records from QMH - you can do it immediately upon discharge. You can also request copies of all x-rays etc. It takes around 6 weeks or so. We had over 1,000 pages and they were quite prompt really, given the magnitude of our case...
 
Hi preemie12,

No cardiologist to recommend. But I would like to provide some thoughts given that we have some things in common.

A. I'm a father of preemie twins born at 28 weeks.
B. They were in the NICU extensively.
C. They had cardio issues; one of them required surgery.

I second nicolejoy's statement in that if it's an urgent case, the public hospital system will take the appropriate action immediately. I understand that you may feel a bit helpless, but there are things you can do.

1. If you absolutely want to speak with the cardiologist, then you need to demand it. Certainly the cardiologist will make his rounds at the NICU. Get your attending doctor to arrange a meeting during rounds. Say that you will personally come and wait at any time to accomodate his schedule just to meet him. It's THAT important.

2. If you still can't arrange to speak with the cardiologist, then request to speak with your attending doctor's superior. You don't even have to be rude about it. Just say that you have questions for the cardiologist that your attending doctor can't answer. Your next best option is your attending's superior.

3. Make sure you ask the right questions. Don't let the doctors just tell you what's going. You need to make them know that you're no pushover. A couple of questions that you should ask if you haven't already:
How was my child's condition diagnosed?
Has the diagnosis been confirmed multiple times?
Why does my child's condition not require surgery immediately? (Is this really just because of the child's weight? My child had PDA ligation done when he was barely over 1kg)
How will you determine when my child will require surgery? (Your doctor will probably say "Oh, there are a list of factors to consider". Tell him to list them for you.)
Given the answer to the previous question, they should be able to tell you precisely when your child will require surgery, rather than something vague like "within the first year".

Release of medical records doesn't take long but is definitely not immediate. We filled out a form, paid a fee, then received them in the mail about 2 weeks later.
 
Thank you jvn, elle, nicolejay and jayjay. I do appreciate your comments and feedback and taking time out to reply to this post.

Elle - Thanks for the recommendation of Dr. Richard Chiu, I will definately look into it.

nicolejay - yes, I 100% agree with you. The care at QE is exceptional and I really am not worried about the care my child is receiving there. I am also satisfied that they are NOT treating this case as urgent as his health is stable.

I have requested repeatedly to meet the cardiologist, but since the last echo was done over a month ago, they are not ready for me to meet the cardiologist as there is not much that he can tell me without having done the echo. And as for when they will do the echo - they say its not really needed right now, so the cardio is busy in more urgent cases and this is not really high priority. Which I understand.

I'm still doing my homework and trying to find a good paeditrician cardiologist, who can do the echo, sit me down and go through his condition in detail with me, so that I KNOW whats going on. So if anyone has any recommendations - it would be most appreciated. Otherwise, I'll probably just go to a paeditrician and get referred by them to a cardio based on their opinion.

Thanks JayJay, I have been pretty assertive in this case. But yes, I didn't know about the attending doctor's superior. Thats a good suggestion and I'll try that route. I haven't even been able to meet my attending doctor much even with multiple requests it takes about a week before they meet me. Most of my interactions are with the attending nurses. But I'll definately try what you've said.

Regarding medical records - so I guess I'll apply for a copy only once the baby is discharged so that it would be the most up to date record.
 
my LO sees Dr Richard Chui and he's very good - if you need yet another pedi. you can find Dr Barbara Lam - both would probably be able to give you good recommendations of pedi. cardiologist (Dr Lam used to be head of NICU at QMH before turning private)...best of luck with everything
 
Regarding meeting with your attending doctor, just tell the nurse that you want to schedule a meeting and then provide these 2 suggestions:

1. Ask to schedule a meeting on those dates when the attending doctor is on-call during visiting hours. Certainly, he/she will be on-call at least a couple times during the week.

2. Tell the nurse that you are willing to come in the morning when the doctors do their rounds. If I remember correctly, the doctors do their rounds at about 9am daily before they head over to the out-patient clinic. Ask for them to meet with you for a few minutes after their rounds.
 
To second what JayJay said, I would insist on a meeting - I believe that you should be able to do so. When my daughter was in NICU, I did that on quite a few occasions. Some times were more successful than others. Some doctors (such as the orthopedic one, the one who is most important in my daughter's case) I got significantly better answers/better quality time with them when I saw them as an outpatient after my daughter was discharged. I am sure that they will have you follow up with a cardiologist quite regularly given your son's situation, and you may find better answers when you have outpatient appointments upon discharge. One thing to do is to write down all your questions and then when you do see someone, you know what to ask and don't forget anything.
 
Definitely agree with nicolejoy you will get better answers as an outpatient case.

When my son was discharged, the hospital arranged the outpatient appointments for us. You will probably be referred to Queen Mary since they are the main public hospital that handles paediatric cardiology. They are very thorough but the downside is the waiting – I think on our first few visits we were there for about 4-5 hours each time.

The procedures carried out are height/weight, oxygen saturation test, chest x-ray, physical exam and consultation with doctor, electrocardiogram, echocardiogram and another consultation with doctor.

Our appointments were weekly for the first month of so, then gradually spaced out to every 3 months prior to surgery.

If you want to seek a second opinion with a private cardiologist, they may only do the echocardiogram.

Thanks for your PM and please feel free to ask any questions.
 
my son is at the NICU at QMH and if my assumption is correct, the doctors should perform the same # of rounds daily and have some time to meet parents. at QMH they do 2 rounds during the scheduled visiting hours, but only during the 2nd round (around 6-7pm) will the doctor(s) actually stop to answer questions...and even then they only give me 2mins. the less serious the case, the less time they give you - with my 1st daughter they gave me a good 3 mins and she was critical - with my son, i've gotten 30seconds of the doctors time and mostly it's talking with nurses whom i must say tell me pretty much the same thing but in a less "politically correct" way than the doctor. i'd ask the nurses what time they make there rounds and sit there to wait for the doctor - they will answer your questions...just make sure to have them written down so you don't forget what to ask. sounds like a good sign though from the vibe i get - they are very thorough at the public hospitals - so they will not let any stone go unturned if they see the need to investigate -
 
Sorry to hear of your baby's situation. From what I know, Dr Maurice Leung is the most renown pediatrician cardiologist in town. Best of luck and try not to worry too much, the problem will be fixed soon! Stay strong and hang in there!
 
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