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11/19/2011 03:24 PM

25 weeks pregnant(page 2)

whatthefisup
whatthefisup  
Posts: 440
Member

Hi Shell, welcome to the group. My husband and daughter have ToF and they are both really small. My husband was 89lbs in high school and was always made fun of. Even now at 33 he still looks really young, although now is barely starting to gain weight. My 5 year old daughter with ToF weights only 2lbs more than my 2 year old.

Im sure you know why ToFs are smaller, but for anyone else who might read this Im going to explain real quick. In a ToF heart some of the used blood (oxygen depleted) crosses over through the septum defect and is recirculated. This means children with ToF have lower oxygen levels in their blood. In addition to this their hearts simply have to work harder to function at a normal level. This mean more energy/calories are use than a normal heart and blood is not as rich as it should be. Even after repairs ToF hearts still have to work harder. They will never operate at full function.

With all that being said, I dont know what to tell your son. The only solutions I can think of is help him pack the calories in. Maybe get him some protien bars or powder for shakes. Also help him build self esteam, maybe with a talent. What about a musical instrament? Maybe something like that will help keep his mind off of things he cant change.

Tell your son he is not alone. There are others who know how he feels. Good luck and best wishes!

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11/21/2011 10:24 PM
SHELL4
SHELL4  
Posts: 2
New Member

Whatthefisup Oh my gosh thank you so much for your reply. It brought tears to my eyes to hear that your husband was that small in High School. Wow I am really hoping to try new things as far as my sons eating thank you for your input. My goodness your daughter was born with TOF also. I was gonna ask my sons Cardiologist about my son & what is the chance that he could have kids with TOF as well. Can I ask if you were told that if you & your husband were to have kids what the chances were of the kids being born with TOF? I hope that all is well with your daughter & your husband. I am def doing alot of research on TOF more now than ever especially since my son will be having his valve replacement at some point. Thank you again with suggestions of exploring ways to build my sons self-esteem. He does love music & dancing I am gonna speak with his Drs. about this as well. I appreciate you taking the time to read & respond. Wishing you & your family a great week.

11/22/2011 09:06 AM
whatthefisup
whatthefisup  
Posts: 440
Member

I think this forum is such a wonderful place. Other than my husband and daughter I have never known anyone else with ToF.

ToF has never before been considered to have genetic factors. But more recently there have been studies that indicate a connection to the MTHFR gene. If there is a gene or genes that make ToF more likely it still does not mean that gene is the cause. For example, you have probably heard of the class action law suits against pharmaceutical companies for the connection between SSRI's (prozac and other anti-depressants)and ToF, right? So why would only SOME pregnant mothers who take prozac have babies with ToF? My theory is that prozac is, or can be a trigger to the ToF gene... I was taking prozac when I became pregnant with my daughter, but because my husband has ToF we did not get to participate in the class action suit, go figure!

Any way, this is indeed a very interesting subject; one Im happy to be discussing. Smile


11/24/2011 07:33 AM
creelander01
creelander01  
Posts: 17
New Member

So far, my grand daughter is gaining weight really good. She is now 14 lbs at 3 months old, but it is good to know that people with TOF have a hard time gaining weight. As for her heart, we will find out more when we go for her medical appointment in Winnipeg on December 16th. I have so many questions for the doctor, but don't really know what kind of questions to really ask. Maybe give me some ideas on what kind of questions to ask!

11/24/2011 06:13 PM
whatthefisup
whatthefisup  
Posts: 440
Member

Every heart is a little different. But the first thing you will want to know is when do they think she will need surgery. The research shows that the sooner the repair is done the less likely that scar tissue will affect the sinus node. This is important later on in life. The sinus node is the "pace-maker" of the heart and sometimes in adulthood ToF patients end up needing a real pace-maker (ICD) because of the damage from earlier surgeries.

Once you guys know for sure a surgery will be happening you will want to know exactly what they will be fixing. This deppends on how bad the deffects are. Almost certainly they will close the VSD. You will want to ask about the pulminary valve and the tricuspid valve. You will want to know if it is possible to widen them or if they will need to be cut wider.

With my daughter they had to cut open the pulmonary valve along the artery and sew in tissue from a cow. They also had to cut the leaflets of the tricuspic valve so they would open wider.

If your grandaughters pulmonary valve does need to be cut in order to widen it, then you will want to ask if the cut will be running parallel with the artery or purpendicular. The reason this is important is because almost every time the vavle is cut purpendiculary it will need to be replaced in the future.

You should ask if they think she will need any conduits (artificial arteries) to increase blood flow...

Hmm, Im trying to think if there are other questions that would be helpful. I think I covered the major ones that I would ask. Just remember that the doctors are always looking out for your grand daughters best interests. Its scarey to give your little baby away for a big surgery, so just be strong and have faith in the doctors and nurses.

We will be sending best wishes her way. Let us know how the appointment goes please. Smile

Post edited by: whatthefisup, at: 11/24/2011 06:16 PM


11/25/2011 07:43 AM
creelander01
creelander01  
Posts: 17
New Member

Thanks so much whatthefisup! I will write up the questions to ask the doctor and I will let you know how it goes. Thanks again for your reply!
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