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01/22/2012 11:01 AM

TOF with absent pulmonary valve

hostlucy
hostlucy  
Posts: 44
Member

Hi everyone,

I'm Lucy and am currently 28 weeks pregnant with a boy that has TOF with absent pulmonary valve. Saw the cardiologist this past week and she said that she has seen 6 babies born with this condition in her 20 year career and half of them died either the first month of birth or during the initial operation because of respiratory issues and not the heart problems. It's so disheartening to know that in this day and age there is nothing they can do to help with the airways. It's going to be a long 12 weeks until his birth and knowing exactly how bad his condition is.

Anyone else have this or have a child with this condition?

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01/28/2012 08:43 PM
valencialiew
Posts: 8
New Member

hi lucy,

My first babies girl was just born in last year 2011 dec 29 and immediately discover she have TOF. and that is not symptoms and signs during pregnant. When she was born, she was not breathing and doctor immediately given her oxygen and hearing the heartbeat have mummur and start do X-ray and after 3 hours checking and figure out she have heart disease. Second day of birth she was arrange deliver to national heart institute for immediate scan and check. Doctor explain this is call TOF. and explain to us our baby girl need to do first operation which is call BT-SHUNT but due to her weight is below 3kg which is 2.69kg. She was admit to the NICU for nursing care and gain weight till 3kg and above and start do to the operation. Now is passing one month and she is 3kg now, and we are waiting for the first operation. Refer to our doctor told us after the first operation, we need to wait our baby girl weight grow until around 10kg have to do second operation also is complete operation. We are now in the situation was financially and mentally stuck. But we trust on GODS. we believe GODS will help us pass through all the process and our first child will getting well. So you have to be strong also. In my praying i will pray for your baby also. I join this group hope to get more information and support during this long term process of life.


01/29/2012 02:19 PM
whatthefisup
whatthefisup  
Posts: 440
Member

Hey Lucy and Valencia, welcome to MDJ!

I'll off my support to you both as the group leader for the ToF board. Both my husband and one of my daughters has ToF. Feel free to ask me any questions, any time.

Lucy, I have never heard of the pulmonary valve being missing completely. That sounds like a scary diagnosis. I would like to hear more about the types of corrections the cardiologists are wanting to do. Write back and tell us more if you have a chance.

Velencia, where in the world are you and your sweet baby?


01/29/2012 06:37 PM
hostlucy
hostlucy  
Posts: 44
Member

Thanks Valencia, we are trying to be strong. There is nothing we can do but pray at this point. I will pray for your daughter that all goes well.

Hi Wendy,

TOF with absent pulmonary valve is the rarer type of TOF and worse because of the compression issues that arise. They are planning on putting in a conduit to replace APV and they will be placating the arteries to shrink them to normal size. They hope that he will do well enough to wait until he is between 6 to 18 months before initial operation. That's all they are saying for now.


01/30/2012 10:25 PM
whatthefisup
whatthefisup  
Posts: 440
Member

That is a big window of time isn't it, of course though they can't narrow it down at this point. One thing I want to pass down from my experience with my baby is that I wanted to wait as long as possible before she had her surgery. She could of had her repairs done at 6 months, but I pushed it until she was almost 2. I wanted her to gain weight and just grow. I thought it would be better that way, and not to say that anything went wrong because it didn't, but after the fact I learned that time has shown it to be better if the surgery is done younger. The reason for this is because the scar tissue can be thicker and impact the sinus node more the older they are.

Think becomes most important when they are older as adults. ToF adults have a high risk of arrhythmias simply due to sinusnode (spelling ?) damage. My husband had this problem to an extent where now he has a pacemaker... So basically what I'm saying is if your baby's cardiologist is kind of hum-hahing around with the time frame I would suggest pushing for sooner rather than later, of course as long as it's not too soon. Smile

Any way, good luck!


02/01/2012 03:51 PM
hostlucy
hostlucy  
Posts: 44
Member

Thanks Wendy. It's something i'll definitely consider.

02/01/2012 11:47 PM
valencialiew
Posts: 8
New Member

hi lucy

Thanks for the blessing

hi wendy

We are from Malaysia. My daughter was just discharge on 31st Jan 2012.

I have so many question to raise up here and wishing to get more information from both of your experience and the group.

On 30th of Jan(Mon) hospital was ring me up for arrange my daughter admit to national heart institute for first operation which is BT-SHUNT. My daughter gone through all the echo, x-ray checking and we was stay overnight there waiting from the specialist to explain to us how is the operation go through. until the midnight we are not consult at all. in the next morning which is fall on 31st of Jan(tues) Doctor explain to us my daughter was well for current, So no BT-SHUNT for this moment.

my daughter history, after 2hours born discover she have heart disease, and the next day she gone through all the echo and x-ray from the specialist. They told us is TOF. Since the day she was using Prostaglandin to maintain her pda open about a week. After Prostaglandin was off and start using propanolor almost 2week half until now.

Specialist explain to us my daughter PDA size was about 4mm and big enough to supply oxygen to her body for this moment and also PDA was not closing after Prostaglandin been off about 2week half. So they decide no BT-SHUNT at this moment.

They explain to us if do the BT-SHUNT it become over oxygen in her body and it was not good as well. Second reason she is about 1month and 3kg, that is risk there as well even BT-Shunt is common operation. If possible will wait till she growth bigger and gain more weight then perform the total correction. because BT-SHUNT also is temporarily only is not fixed for TOF.

if during this period of time any happen to my daughter are not stable, that is only way need proceed for the BT-SHUNT.

They explain to us the PDA size 4mm are big enough and will not close immediately, some time it was open in whole life, there is no body will know when is will close.

My daughter now taking propanolor for every day. and we are 24hours monitoring her situation because we have no idea when she will turn blue and what kind of situation we shall send her over to hospital for immediately check?

What should we do during this period of time? what should do and should not do on the baby? Current we feed her 80ml milk every 3hours. During the feeding time, she was easy get tired and always fall on sleep. 80ml usually it will take about 1hours++ to finishes. is that normal? Any recommended milk are more nutrition and good for TOF baby? or other nutrition or vitamin she can take for this moment? How do we know her pulses are ok? Because during in NICU she was monitor by a screen show her pulses sometime are 50,60,70, and current after take the propanolor she can reach 85 sometimes. Now we do not know what pulses she have.

and during prenancy we have take USANA vitamin, can we continues to take those vitamin now? This is our first baby also first time take USANA during the prenancy. We are no idea because both of us do not have TOF or heart disease. We had been ask from others doctor they told us sometime that is another issue was the gen.


02/07/2012 06:55 PM
Mumfy
Posts: 3
New Member

Hey there Lucy, I actually was born without a pulminary valve and am 37 now, so things can go fine. They actually did not put a valve in until I was 25 years old, they put Teflon patches over holes that I had in my heart, but dit not patch them up completely to lesson the burden on the heart. At 25 they put in a valve from a cow and I still have that in me with only minor leakage.

I was trerrified that one of my girls woudl be born with ToF, but they were thankfully ok. I cannot imagine what you must be going through, but things can definately go right, and your baby could live to be old and gray. (well somewhat gray around the edges!!!) Smile

John


02/07/2012 07:25 PM
hostlucy
hostlucy  
Posts: 44
Member

Thanks John for posting your story, it really gives me hope!! Smile

03/07/2012 11:57 AM
cspriggs
Posts: 3
New Member

Hi Lucy,

My name is Crystal Spriggs and my daughter was diagnosed with TOF with absent pulmonary valve when I was pregnant with her. I cannot remember the exact week that I was diagnosed, but things did not look too well when I was carrying her. To make a long story short, she is now 11 years old and ready to go to middle school. She initially had surgery two weeks after she was born, was on a breathing machine, sent to a pediatric hospital to further get off of her breathing machine, she had surgery in 2010 to have a pulmonary valve inserted, and she is a wonderful blessing. You can make it through your pregnancy. Just stay prayerful and God will get you through it. For the first year of her life she was in the hospital and all I can say now is that if you put your trust in God things will work out fineSmile

Crystal

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