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04/01/2012 10:49 AM

TOF with absent pulmonary valve(page 3)

venkata279
 
Posts: 6
New Member

Have a couple of questions,

1.Our baby seems not to know how to suck milk and he gets tired, we can see him sweating once he starts sucking. We want to know if this is a common issue with TOF and absent pulmonary valve babies? Does this get better after some time?

2. He was 3.12 Kgs when he was born due to the intubation procedure and little to no milk provided during this time, he lost a lot of weight ,about 600 gms. He has started gaining weight since the last 6 days. Is there a defined period by when he will gain weight?

3.He seems to be requiring oxygen support ( 0.5 litres) when he starts crying when he is hungry. Is this going to be like this forever?

Sorry people we are searching for answers, even though the doctors have been patiently answering most of our questions.

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04/01/2012 05:49 PM
hostlucy
hostlucy  
Posts: 44
Member

I don't have personal experience but I'll try to answer from what i've read:

1) Yes this is common amonst tof babies and probably more so with those w/absent pulmonary valve. It should get better once he's had his operation.

2) Don't really know but I'll guess once he starts eating regularly, he'll put on the required weight although I have read that it takes longer for TOF babies to gain weight due to the sucking/getting tired issues.

3) Should also resolve itself once operated.

Good luck, hope he gains weight soon! *still praying*

Lucy


04/02/2012 10:44 PM
JimmyG083
JimmyG083  
Posts: 14
New Member

Hi Everyone,

My name is James and my wife Rhonda is 21 weeks pregnant. We live in Sydney, Australia.

We recently had our 19 week ultrasound and they picked up some problems with our little bubs heart - Our little one has been diagnosed with ToF with Absent Pulmonary Valve Sydnrome.

We recently had the FISH test to see if there were any Chromosomal anomolies as sometimes I belive this is a Sympton of Vilo Cardial Facial Syndrome or Di Georgio's.

I am happy to say that initial tests suggest that we are ok as far as Chromosomes go. So hopefully this is just a heart and breathing issue.

I am overjoyed to find this support group and of course I am trying to educate myself as to what we can expect to go through in the future. If anyone can offer me any advice or some idea of what we may be up for here - I would appreciate it.

I am glad to hear some positive stories and I am trying to hold on to those to give my wife & I some hope. Luckily we have some excellent Doctors and an excellent Childrens Hospital that we live on 10 minutes from in Sydney. I look forward to any responses!


04/03/2012 10:36 AM
Slowry5
Posts: 8
New Member

I just wanted to post to provide my experience to the new or expecting parents. My son is 3 1/2 years old and was diagnosed with TOF/Absent Pulmonary Valve syndrome at our 20 week ultrasound. His case was severe and he ended up on a breathing tube about 1 week after he was born. He had surgery at 6 weeks, and a cath at about 4 months. His branch pulmonary arteries were 25 mm (they are supposed to be around 4-5 mm at birth). His surgery took down his branch arteries to a much smaller size and repaired the other issues with his heart. He was in the hospital for about 2 months after his surgery due to some other complications (pneumonia) and then because he could not learn to take a bottle. Long story short, we came home when he was a little over 3 months, and then he had to have a cath about a month later as one of his branch arteries was a little too small. The first year was crazy, but now things are very normal. He is in school, has no restrictions, and no one would know just to look at him. He does not have a functioning pulmonary valve at this time, so we know he will need a replacement at some time in the future- not sure if this will be via open heart or cath. I am a member of other groups and know of TOF/APVS cases that have not had as good of outcomes, but also know of a lot where the kids are doing great. The oldest child in one of the other groups just turned 17 and she plays sports and is very active. There is no way to know how each child will do, but there are lots of reasons to have hope. It is important to go to a good hospital and find a surgeon who has experience in pulmonary issues as well as heart issues. I am willing to answer any questions any of you may have- anything I can do to make this journey a little easier!

Shannon


04/09/2012 04:09 PM
JimmyG083
JimmyG083  
Posts: 14
New Member

Hi Shannon,

Thank you so much for sharing your experience with us.

I am so glad to hear your son is doing ok and that things are settling down a little bit for you. Your post was a real burst of positive energy for us. Thanks!

I would live to hear about how you guys go with the valve replacement in the future. Take care and god bless


04/09/2012 04:27 PM
JimmyG083
JimmyG083  
Posts: 14
New Member

Hi Venkat,

I have been reading your posts with a lot of interest and with a lot of hope for your child. Please keep in touch and let us know how he is progressing. We will be going through this in 4 months time. I am so glad to hear things are getting better for you gradually.


04/10/2012 09:41 AM
hostlucy
hostlucy  
Posts: 44
Member

Hi everyone,

Shannon, thanks again for your post and am also glad that things have settled for you and you son is leading a normal life. That is all we can hope for.

Venkat, still thinking about you and your son and hope he is doing better. Please update when you can.

Jimmy, there is definitely hope. I'm sure you know from reading this thread that my son was diagnosed with tof/apvs and we were given really bad odds as the cardiologists told us 'worst case they've ever seen'. My son was born last week and has shocked all doctors with how well he is doing (God bless). He has not needed to be intubated and is breathing well on his own. He saturation is a little high and they are medicated him for that. He was also born with a imperforated anus and had a colostomy done at 1 day old and will have a full repair at around 3 months. We were told that the imp. anus is sometimes associated with tof. They are waiting to increase his feeds and lower his sats and he may be released by the weekend! This is more than I ever dreamed possible, of course I know other issues could arise but so far things are looking great. I hope this gives you and your wife hope.

Post edited by: hostlucy, at: 04/10/2012 09:42 AM


04/10/2012 07:24 PM
JimmyG083
JimmyG083  
Posts: 14
New Member

Hey Lucy!

Wow that is awesome news for your family and your little boy. I am so happy for you and your family and I thank you for commenting. I would love to hear howw the litte fella gets on in the future. Did the Dr mention anything about the replacement valve? I look forward to hearing from you.


04/15/2012 12:03 PM
Slowry5
Posts: 8
New Member

Lucy- such great news about your son! I am so glad to hear that he is doing well and will keep you in our thoughts that he continues to do great! My son also had an additional defect besides his heart- he had craniosynistosis which is when two or more plates in the skull fuse together prematurely. He had surgery for that at 6 months but by then he had been through heart surgery so neurosurgery seemed like nothing! Anyway so glad to hear the news.

Jimmy- as far as replacement valves for Owen, right now we are just in wait and see mode. We will probably have a cath to replace the stent in his right branch artery sometime in the next few years and then they will get a good look inside and determine more about valve replacement. I know it could be just a few years or many years away, so we will just wait and see!


04/15/2012 04:33 PM
Heartbabymom
Posts: 38
New Member

Hi everyone,

My name is Bonnie, live in Montreal, Canada. My situation is similar to Jimmy's. I found out my mini-me has TOF with APVS during my 20 wks ultrasound 2 weeks ago. I was in shock, distress and worry for 2 weeks, waiting for the test results of my aminocentesis (with the delay caused by Easter holidays). Now the test results came out normal, anatomy ultrasound also turned out fine. I m taking 1 day at a time, and try to continue the pregnancy like a normal one, except with a lot of ultrasound exams and follow ups.

As a former healthscience student, I know the stats, it is rare, it is serious, but it is repairable. It is good to read so many stories with good outcomes on this forum, it helps to keep my moral up and my mind sane.

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