Tetrology of Fallot

Marsha - posted on 03/29/2013

My daughter was born in 2000 undiagnosed until the first 24 hours, I had no prenatal problems except a 2 vessel umbilical cord. Her birth was traumatic, just very blue when born and this contributed to a quick diagnosis, within 24 hours we were transferred to Dallas Childrens Hospital, many tests run for the next couple of weeks but went home with TOF diagnosis only. She then had repair at 6 months of age, very successful with a stay at the hospital for 3-31/2 weeks, one medicine digoxin. We have raised her as if nothing is wrong, she in fact wants no one to know, she has been active in all sporting acitivities. At age 9 it was necessary for her to have her Pulmonary Valve replaced. We again had our surgery at Dallas Childrens Hospital, with Dr. Joseph Forbess performing the bovine valve replacement. This surgeon is amazing in my book, both because of his personality and ability to relate, explain, and care (never seen such care and compassion from a surgeon before and after procedure). This 2nd surgical recovery was very emotional and very trying for the patient and family, perhaps because they are much more mobile and suffer the inability to go. My daughter has an unbelievable tolerance for pain, she rarely complains and is extremely tough! Like I said previously she loves sports and now excels in volleyball, she is an outstanding player and is trying out for USA high performance program in April. We are not sure why but she seems to be able to push herself harder than other kids, you would think the opposite would be true, she really is a fighter, when people who watch her athletically find out she has a heart defect their is some level of disbelief. I can tell you at the time of her surgeries I asked many questions from the Doctors, put all my trust in GOD.....prayed for the Doctors, prayed for healing, had an amazing church community who also believes in the power of prayer and then turned it all over to GOD....in fact the night before her 2nd surgery I was awoken from a dream/vision of my daughter laughing and smiling being given a piggy back ride by jesus, calm came over me and I knew she was alright! You are smart for doing your research, find great Doctors and remember there are people like me praying for you and your son.

Anne - posted on 02/15/2013

I remember whenI had my surgery in 1963 it too was a complete repair. I was in the ICU for almost a week in the hospital one day short of a month. About 10 years later I was in the hospital for a check up and a little boy had the same surgery and was in the hospital for 10 days total.

We would have thought it was science fiction if some one had talked about Heart Transplants, and artificial Hearts.

Will - posted on 02/05/2013

Just a quick note of encouragement ... my wife was born with ToF to immigrant parents who didn't understand English (or exactly what was wrong with their little girl), but managed to secure the best care possible for her. Theresa's first ToF surgery was when she was 6 or 7, and the second and final surgery was at the age of 14.

We didn't know if she'd be able to carry pregnancies to term, but God did! We eventually had 3 boys, all healthy and without signs of any cardiac defect. She's also had to put up with a husband who's not only incredibly A.D.D., but has spent his professional life as a paramedic/firefighter and as a police officer. Needless to say, her heart has had its share of work-outs!

Theresa is 54 years old, working full-time, and the Nonna (Italian for grandmother) of two. Her cardiologist says her heart is the healthiest ToF heart he's ever seen! Considering her surgeries were done in the 1960s and 1970s, well, just think of how far medicine has advanced since then!

Paula - posted on 06/19/2012

Wow, I wish had this type of feedback and support when my daughter had TOF back in 1985... I only knew of 2 other people with it and they were the families I met while we were in Greenland hospital NZ. She is now 25 years old and has a gorgeous young son and is 8wks pregnant with her second child. She is wanting to have this child at home but is unsure of what that means because of her heart history. So I am doing a little bit of research, I am also doing my Midwifery degree so this is an area that has become of great interest for me. I would be interested to know if any mothers have family history of TOF. I had a sister who would have been 50+ who was born with heart problems, no specific diagnosis, who unfortunately was unable to survive back in those days, so possibly there is a genetic connection there.Thank you for all your wonderful sharing...

Tasha - posted on 11/17/2010

My son was born May 6,2010 with tetrology of fallot and where is inteines are on the outside of his body. I knew about the tummy issue at 10weeks but i didn't find out about his heart until i was 6 months along.

Ashley - posted on 11/16/2010

Carol, Thank you so much for following my blog. It means so much to me! My hope is that the word can spread and I will have more followers, reading my blog. I am trying to make a positive thing out of what I have been given...your support means so much!

Carol - posted on 11/15/2010

I am so happy to hear your positive outlook Ashley! It is amazing to me to find so many happy adults that grew up with TET that are living full healthy lives! Good luck to you! I will be following your blog! =)

Ashley - posted on 11/14/2010

Hi everyone. I have been reading all of your posts about your babies being born with Tetralogy of Fallot. I am so sorry to hear that, however I know everything will be okay. I was born with Tetralogy of Fallot. I had open heart surgery at the age of 8 months old and recovered so well. My surgery was done at Doernbecher Children's Hospital in Portland, OR. I was sent home without any medication. I haven't had to take medication my whole life :)
Up until now, I have had yearly check ups with the doctors. I am now 25 and just found out this past week, after visiting with OHSU, that I will be having another surgery in a few months. It is a fact that Tetralogy of Fallot patients have a few surgeries throughout their lifetime. I am now a mother, I had a baby girl almost a year ago. My pregnancy was great, I was super healthy, I had a great labor, no complications. I sometimes forget that I have a major heart condition. I have felt very normal my whole life! I was a dancer for 13 years, a cheerleader in High School, I have always been healthy. Now with this next surgery coming up, as scared as I am...I am so excited to feel even better and healthier.
I want you to know that your babies will be great and healthy. As scary as the condition is, technology these days has allowed doctors to do these surgeries so easily! We are so lucky!
I have started a blog, where I am sharing my story. I will be keeping everyone updated with my surgery (before and after) and during recovery. My surgery will be scheduled for February. I have also started a fundraiser, where I will be raising money to donate stuffed animals to Doernbecher Children's Hospital in Portland, where I had my surgery as a baby. These stuffed animals will be distributed to the babies and children recovering from heart surgery at Doernbecher.
Please follow my blog to learn more about the fundraiser, and to stay updated with me.
ashleydrurymylife.blogspot.com
I am also wanting to share stories that parents have about their children with Tetralogy of Fallot. If you are interested in sharing your story, please email me @ ashleyadrury@gmail.com.
Stay strong and positive!

Carol - posted on 10/18/2010

Hi. My oldest was born on June 4, 1992 with TET (what they called it in 1992) She was 2 weeks overdue, and we had 2 failed inductions. She ended up being born by emergency cesarean after discovering my water was broke and she had none surrounding her causing her heart rate to drop dangerously low with every contraction. When she was born we had a new nurse. It was her first cesarean delivery. Little did I know at the time they scared me with that info she would be the one to save my baby's life. Had she not questioned how come Devin was so blue they wouldn't have known about her condition till it was too late. The other nurses just kept telling her it was normal for a cesarean. She finally got someone to look close, and 4 hours after birth she was being transported to the local childrens hospital. The doctors all saying she wouldn't have made it through the night. She had a BT (Blalock-Talsig) shunt at 3 days old. She had so little oxygen in her blood they couldn't even sew her up after the surgery. She was taped from the sternum to the spine. We were told at the time that she wouldn't need another surgery until she was 3 or 4, but the following Easter she started having severe blue episodes. After a heart catheter it was discovered her shunt was failing. They did open heart surgery on my first baby on my first Mothers Day! 3 days post surgery she threw a clot and stroked out. After fighting with the hospital staff for over 5 hours that something was wrong and she needed help it was too late to stop any further damage. She was paralyzed on her left side. The neurologist told us she would never walk, and very well would be chair bound as a young adult. I quit my job and we filed bankruptcy and I became a force to be reckonned with! My mother in law thought I was horrible because I used the velcro straps that held the baby monitor to my belly during delivery and I strapped 1 year olds legs to mine and we walked for hours a day! At 19 months my daughter took her first steps on her own! I have a letter from her neurologist telling me he has never in his 21 year career seen as much dedication as he saw in me. I would not take "she will never" as a possibility! I couldn't, she was my baby! My daughter is 18 now, and just had her pulmonary valve replaced last February which in itself is a feat since they told me she would be in by 12 for it! She's still proving them wrong! She still has some minor deficiancies, but to look at her you do not notice them. She has lost the fine motor skills in her left hand so she struggles with things like turning pages and of course typing, however she has been on her high school bowling team, she loves soccer, and she has even played piano! She is slightly delayed academically, however she is a senior this year and while she is not graduating with honors, she is graduating on time! For a long time I wondered "why her?" and for even longer I would cry when I saw her staring at the kids that could do things so easily compared to her, but then she would turn right around and do it herself and all those tears of anger and pity became tears of pride and amazement! She had more determination than me! We lived in almost poverty for the first several years of her life, but I wouldn't change any of the decisions we made! I would tell any parent going through what we went through that you have a lifetime to fix your credit score, but only a short time to impress upon your child the importance of not letting their illness get the best of them! Show them they are just as able as the child next to them and that the bills are not whats important! I know in this day and age credit is everything, but if we would have worried about the bills and I would have stayed working, my daughter would not be walking today! Life is life, it will always find a way to go on! Trust your inner voice as a mother! I was pulled off an on call Dr. by security for trying to send my daughter home with SATs of 78% on no oxygen telling me I needed to remember who the Dr. was! Needless to say he was the one kept out of her room! If you follow your inner strength you will find the answers to everything from the healthcare to the bills! Trust me, I have been there!! Good luck to all of you who are just starting out in the life of Tetrollogy! My you be as blessed in your journey as we were!

Sharon - posted on 05/22/2010

My son was born in 1998 with Tetrology of Fallot. We did not know about his condition prior to birth. Ultrasounds we fuzzy and dark during the late 90s so perhaps that has something to do with the lack of diagnosis??
How is your son doing now?

Sarah - posted on 05/03/2010

Sorry to hear about the struggles that you Mom's have to go through! I do understand the agony that takes place. On a positive note, we found out on Apr. 27, 2010, that Brendon will not need his heart/valve surgery this summer and we will retest this fall. Praise God for his mercies!

Mindee - posted on 01/09/2010

Our little Annibelle was born with ToF. We did not know before hand, but I had a gut feeling that something was wrong with her heart, as I had been born with a heart problem as well.
Her heart didn't respond well during labor, and she died in the birth canal because my doctor had me push before I was completely dialated. Annibelle was revived, and at 21 hours old, I was told over the phone, of her condition.
At 5 months she had her first open heart surgery. She had one more 8 months later, and 3 days after that another surgery to put in a pacemaker. She is now 5 weeks post-op and seems to be doing wonderfully! this has been a terrifying ride so far, but we're hoping and praying for better years ahead.

Sara - posted on 12/31/2009

Hi. We have 9 month old twin boys. One of them was born with TOF but we did not know about it in advance. He had a multicystic kidney that we were watching closely and they checked his heart many times because of that but did not pick it up. He had to have OHS at 14 days old. They did the full repair at that time because they were unable to get a shunt small enough to buy him some time. He was given a 50-50 chance of making it through the surgery because they weren't sure they cold get him on the bypass machine. He's doing wonderfully now and they don't anticipate he'll need any more surgeries until he's an adult. Those were the toughest days of my life... All of you moms and your babies are in my prayers!

Ginette - posted on 12/01/2009

Quoting Sarah:

Tetrology of Fallot

My son was born July of 2006 with Tetrology of Fallot. We did not know before he was born that there was anything wrong. I am intrested to know if you have a child with this condition, did you know before hand?

My daughter was born on June-09-1976....No signs for the nine months of any complications....but the ....process nightmare there after.....After going to the hospital...labour pains ...13 hours...before deciding to go with thec-section...Told Baby to week to push....In my head told my mother..hopefully my husband gets here in time still up north travelling back by trains....Of course..he got there after the baby was born not is fault ...stayed at my bed side until I open my eyes...I did not get to hold my baby...until the next morrning...after During the night I kept hearing them talk about the Baby Rogers...I kept saying to myself I gave her a special name baby SHELEY-ANN  why not use it....then I felt back asleep...then woke up saying the doctor will see Mrs rogers in  the morning first thing....I was worried...I got up early went to the pay phone and called my husband to come in.  They flew her to the Ottawa sick children hospital  CHEO.  diagnosis....congenital heart disease.   the hole was at the center and she had only one artey...the one missing was the major one...so they decide to operate to just put some kind of attachement rubber band...she weighed only 4-8 ounces....this went very well she went down to lower then four then back up with time to 7 pounds....strong little girl a real fighter...she came home after the months but she had a special heart medication to take and I had to order her special milk by out of town came in by voyageur bus.....The doc specialist said that they needed to wait till she was at least seven years....During ...off and on....she had to go and get rush in no ambulance ther the closest hospital told me drive to the city emergency out of town they will be waitning for you....all this while my husband is out of town...I was like a zombie scared no one with me taking this on..I guess was something that I never wish on nobody.....Please make sure we are all equipped at home ...Because when they say we need the bed for another baby...I just don't understand ....why    did they not tell you or us she as no hope any time soon....GOD we would of ask for sometime together as a family instead of my husband working away and worried sick about us...not healthy for him....GOVERMENT GOT TO DO BETTER>>>>THERE IS emergency for this......please remark my words...this affects you for a lifetime....some mothers or dads gets divorce for this trauma......help others get more ideas get more money involved in this .....have special nurses ready for emergencies....Even the nurse that came at the house I still feel sorry for her never got to see her after the day she gave us the wrong syringe because of this I overdozed my daughter...thank |God she had her formula before this what save her she vomit her whole body pumpimp hard a fountain of milk came out husban was home i just wrap her in her blanket grab her baby bag threw everthing in her baby bag grab a wet baby cloth..wipe her face and then rayed...her heart beat was so fast.......then what....emergency doc...taught i was an unfit mother...starving my baby...my husband took is daughter and ask me to wait in the waiting room...Doc he says I got something to say to you alone.....so he did....I never got the apology from him....but also would not recommend him to nobody...even though my aunt had him as her children doctor....I might have less money had to stop working even though she was at sick children hospital in case they needed the bed she would be home ....or home was a full time job.  no help here from no one just no one telling you nothing no special need then my husband got layed off ...then is dad died then two months later our daughter passed away....I still think today...that they stil need to help mothers and fathers to cope financially and someone ther for things that we cannot or will not ask anyone for the help....I gave birth to my son three years later he had a whole but the outside of is heart...close after awhile doc to two x-rays....and also later had colic hernia from is belly button....then came a little girl...everything perfect I passed out before going in the operation table...I was nervous I did not know the sex of any birth...was a surprise for me everytime....she was born with ...the tube of her nose and throat samller than normal...but thank god without any complications..he said it could have been worse....a condition ...(stridor)...i guess ...is they would have to make a whole at the center of her neck and she would have to breath from there....My son Randy is 30 today my daughter Laurie is 29 and my first...ANGEL...is waitng for us one day we will be all together as a whole family....love u always mom...xoxoxo...and ....dadxoxoxo.

Emma-kate - posted on 11/20/2009

HI my 2 year old was borne with TOF. We found out at the 18 week scan as I have a heart condition we were looking very closly at the baby heart. He did a lot better than we thought . Born early but gained wieght well and has stay in 97 % for height and wiegth. He had his op at 10 mnts. Heart wise he has done so well you would never know. We have had a hard time with sleeping as dosent like being on his own and is a real mummy boy. I found it hard as I knew to much having grown up with a heart condition and I have 2 operations and waiting on my 3rd one. But all trhe heart kids I have meet seem to have something extra to get them through life.

Sharon - posted on 10/28/2009

My 11 1/2 year old was born with TOF. We were not aware of his condition until the day were released from the hospital. During labor his heart stopped; he was delivered via emergency C-Section at a small, local hospital. We were sent home with orders to not let anyone touch him and to keep him warm, warm, warm...wake to feed!! At one week we received his diagnosis. He had several TET Spells during the first months of his life. Corrective surgery at 6 1/2 months. He spent a week in the hospital: came out off of anesthesia well, lungs filled with fluid (prayers work!!!), external pacemaker activated several times...WE MADE IT!! He is doing well, all things considered. He gives us scares, but I think that is more mom and dad being cautious than him having problems. We have had cardiac MRIs and numerous other testing (genetic testing as well as testing for Downs Syndrome and related issues. - ALL NEGATIVE!!) He does have numerous food allergies and is allergic to latex...all the research I have done seems to relate it to the latex he was exposed to as a baby and throughout his young life??

He bowls ever Saturday, is in Boy Scouts (hikes and camping in all types of weather/conditions), is in the school band (clarinet), and plays lacrosse. He struggles some due to mild pulmonary insufficiency and mild asthma but WE ARE GREAT!! He understands that he has limits and handles them well.

For all you moms who worry about physical sports as your TOF children get older, look in to bowling. It is an activity they can be involved in throughout life and there are college scholarship opportunities!! Matthew loves the year-round interaction with children his own age who won't pick on him for not playing football!

Blessings to you and your family!

Sarah - posted on 10/27/2009

I got the news from the cardiologist today. It was not at all what I was expecting to hear. We are looking a surgery next year already. What a bomb shell. I feel like I did when he was born. I'm devestated, as I was not prepared for it this soon. At least he is still healthy during this early flu and cold season (knock on wood). I hope all of you are doing well.

Holly - posted on 10/26/2009

My son was born sep of 2008 and i diddnt know until the day after he was born

Anne - posted on 10/15/2009

I Sara I am keeping you in my Prayers.

Sarah - posted on 10/15/2009

Wow cows valve. This is something that Brendon may have to look forward to. Thank you ladies for sharing. This is so Encouraging!
I'm counting down the days til the 27th. We see the new cardiologist then. I'll keep you all updated. I also have his story on www.caringbridge.org/visit/brendonstephan and it's updated. your more than welcome to visit it. I just was rereading what we all have wrote on this page. I'm glad I did. I forgot some of the stuff I had written. I hope all is well with each one of you and your families. Take Care!

Shana - posted on 07/20/2009

My daughter Kayla, is 16 now. She was born w TOF, and had surgery at 3 months & at 18 months. She about died because the dr where we live kept telling us there was nothing wrong and we kept taking her back. We knew something was not right.

Anyhow, she is 16 and doing GREAT. She has been a cheerleader for 8 yrs. now and is very active! She will have another surgery soon, to have a valve from a cow put in. She is okay with it and we know she will be just fine. :)

Melanie - posted on 07/20/2009

We did not know there was a problem before hand but our son had his tof repair at 4 months old . He is now going on 21 and is in great health. Good Luck!

Kim - posted on 06/08/2009

I think this is great as everybody can share their stories i soo wish i had this when Teri was a baby.Thanks to all. xx
I am just going through Mummy knowing everything as taking her to her appointments to Teri going on her own as she has gone to the adults.At the moment she wants me there anyhow but it comes a time they will have to manage themselves, which is a good thing and i am coping fine lol but it is scary just thinking about it Silly isn't it.
The valve Teri got only lasts up to 15 years and there is so many times they can do it so she cant do certain things Sports like weights and sit ups and instant sports well anything that raises the blood pressure earobics is fine as you warm up first and that lowers it. No fairground rides she hates that lol but i know she does it all anyway but she is only 17. She really needs to stop smoking too. x
thanks
Kim xxx

Sarah - posted on 06/08/2009

Wow. Thank you Kim for sharing. I'm glad that your daughter is doing well. Brendon is doing well now and we are to see the new Cardiologist in Oct. I'm looking forward to it. Most people who see Brendon for the first time wouldn't guess that he has gone through what he has either as he looks like a normal kid. I have been so encouraged by each and everyone's post. Thank you so much!

Kim - posted on 05/31/2009

My daughter was born with fallows as well she had the balloon done when she was 1 day old and the repair at 14 months. She is now 17 and had to have a pulmonary valve replacement in November she had a cows valve put in as its stronger and done really well you wouldn't even think she had problems looking at her. xxx

Kim - posted on 05/31/2009

No i didn't find out till after as well. xxx

Sarah - posted on 03/25/2009

Thank you Sharon for the encuragement!

Anne~ Wow! Thank you for sharing. I'm glad that you are here to share with us.

Brendon still has a persistant cough, but it is not as bad as before. We went to his Cardiologist on the 10th of March, and he had a EKG done. It was normal. He screamed and cried the whole time they had him hooked up. She (the cardiologist) told me that though she is not promising anything, that from what she hears (the regurgetation of his blood/ it flowing backwards through the valve) that there is a Slim chance that he may not need his next surgery at age 10 - teens. He maybe able to wait until he's 30's - 40's. We have to go get an echo done in 6-9mo. to find out. (I'm so excited, even a slim chance is better thatn none.) And since we are moving to the other side of the state, she refered us to a cardiologist over in Green Bay, WI. (who is in a health care system & does send the children down to the Wisconsin's Children's Hospital in Milwaukee, WI.~ Which is where Brendon had his last surgery) So we'll meet him (the new cardiologist) in 6-9mo.  Chris has a new job and seems to like it for the most part (that in it self is a miracle). The Lord has answered my prayers.

I pray that each of you and your families are doing well. God Bless all of you!

~Sarah~

Anne - posted on 03/18/2009

Hi Sarah, I do not have a child with Tetralogy of Fallot I an a grown child(53 years old) that was also born with this condition. In 1963 I had a complete tetralogy of Fallot repair at Henry Ford Hospital in Detroit MI. My mom often said she knew that there was something wrong because this pregnancy was soo different from the other 3. I am married and we have two grown daughters, 20 and 25. Our youngest has Textacardia. Our Dr told us that the two are unrelated. I hop you have a good day. Anne

Sharon - posted on 03/04/2009

Spell, schmell...we all knew what you meant when you typed Croup. Hopefully the weather will break a little and he can get a glimpse of the outside. Maine is bbbbrrrr cold. We have way more snow than we need...:-) Sorry about Chris' job. It is so tough out there. My husband, Scott, is still looking. He has been out of work for 2 months. Absolutely NO prospects! We have it a bit easier...no kids at home (unless my daughter is home from college). 

You hang in there. Spring is coming and Brendon is getting better :-)

Sarah - posted on 03/03/2009

I see I spelled Croup wrong. Thanks for the encouragment. It been depressing lately. Chris only lasted 3days with his job.He is still making us move though. Brendon is slowly getting better. If I don't take him out that is. He is getting cabin fever. He says," mommy, coat on. Mommy, shoes on. Come mommy, out!" Poor thing. And the weather here is not cooperating either. Last night it was down to 2* F. Brr. We are back to sleeping in my room in the basment, unless his cough wakes us up and we have to go get an up-draft with the nebulizer.

I hope and pray all is well with everyone and thier familes.

Sharon - posted on 02/26/2009

Hi Sarah,

   Hang in there. You will know if the doctors are good. I think we have a sixth sense about those things. I know the whole husband not working thing. I recently remarried (3.5 years ago) to a man with no kids...he was laid off 12/31. Mortgage business, UGH. It is tough, but somehow we manage. HOpe your little one gets better soon. Those sleepless nights are hard. I used to feel so close to AJ when we were up. He was a bronchitis, ear infection baby before he had his first surgery. Seemed like as soon as he was off an antibiotic for a few days he was sick again. I am not saying that his heart surgery fixed everything, but he seemed alot healthier after that first surgery. Not as many bronchitis or ear infections. Who knows. Except for the "no contact sports"rule, he had a reasonably normal childhood. For a child that was not "sporty" he saw his older brother ding everything under the sun. It was hard and hard to explain to him. He made it through though and he is doing very well. There is a light (although it seems dim I know) at the end of the tunnel. Hang in there!!!!!

Sarah - posted on 02/25/2009

Sharon ~ Thank you for sharing. It is encouraging to hear about your 21yr. old. My son is battling the croop now since Sat. I'm so tired with getting up with him sevaral times in the night, that I haven't even tried to go to bed yet (it's 12:38am here). He is getting better though. I think we cought it in the early stage.

Now I have to still be like a single mom yet this month while packing to move across State to Green Bay, WI area, after April 1st. While my husband is over there already, living with his sister (which is where he wants us to live when we get there, and I'm frustrated about the whole thing), working his new job he started yesterday. Thank God he has gotten a job!

I hope the health care systems over there are just as easy to work with here. I finally get doctors that I feel comfortable with and trust, and now we have to move. Grr. So for from what I've looked into their systems do not work with the Wisconsin's Children's Hospital in Milwaukee. Which is where Brendon had his last heart surgery. My husband told me the move was to be closer to the hospital when Brendon needs another one. We will see what happens.

Well I better try to get some sleep. God Bless each and every one of you!

Jerilyn - posted on 02/25/2009

My oldest was born with TOF and my youngest was born healthy too... but I went though a few tests to make sure that I was not going to be surprised again. My oldest actually just turned 3 a few weeks ago and we were told over the summer that he will more then likely need any more surgeries... so I have my fingers crossed that it will be true. I also understand how hard it is to be a mother on your own.. I am not divorced but my husband works over 8 hours away and comes home once a month for about two to three days... other then that it is just me... all I can say is that I am tired right now.

Sharon - posted on 02/25/2009

I know that hearing success stories are what help everyone hold it all together. I not only had the child with TOF, but I have a success story with my oldest. He has Insulin Dependent Diabetes. I had a very very busy early motherhood, alone. I divorced when my youngest was 1 year old (she is my healthy one :-D). So....kids are amazing, doctors can perform miracles these days and you just have to have faith!

Jerilyn - posted on 02/25/2009

Well that is great to hear that... especially all of us with young children like to hear that there are older children... well in your case your son is now an adult, that was born with TOF and is doing just fine!!

Sharon - posted on 02/25/2009

Hi,

    My son was born with Tetrology of Fallot in 1986 and we had no idea there was anything wrong. My AFP blood work at 16 weeks was a little off and needed to be repeated, because they thought the dates were off. That may have been some kind of sign. Ultrasound was ok. He had a little fluid in his lungs at birth so they took him to the neonatal unit for 24 hours. They detected a murmur and did an echo. He has pulmonary artery muscle buildup and a VSD.My son is now 22 years old and has had open heart surgery twice, once at 18 months and once at 21 years old. He is doing wonderfully!!!!!!

Sarah - posted on 02/10/2009

Sorry I havent been on lately. Computer problems. Brendon is doing so much better. I haven't had to give him an updraft since I last wrote.

Thank you for sharing Vickie, Lindsay, and Christy!

Vickie ~ I'm glad you little one is doing well! I'm sorry to hear about his difficulty during the nights, and winter months. I hope this season hasn't been so bad.

Lindsay ~ I pray that your daughter will get better, let us know if you need to talk, or any other way that we can be of assistance. I think everyone would aggree with me that we are all here for you!

Christy ~ wow sounds like you have had quite the experience! I'm glad your daughter is doing well now.

Everyone ~ Thank you for you Encouraging words! I'm so blessed by them. God Bless!

Christy - posted on 02/06/2009

My daughter, Shannon was born at 32 weeks. We didn't know anything was wrong with her heart until she was 3 days old. She was diagnosed with a double chambered right ventricle and a VSD and ASD. She really battled to put on weight in the beginning, but was ok otherwise. She came home on a whole barage of meds. Docs kept a close eye on her and when she started going into heart failure at 3 months old, they did open heart surgery. She stayed in hospital for 10 days and 14 days after her surgery her meds were completely stopped. She is going to be 5 years old next week and is the picture of health. She has always been a light weight, but she is just perfect in every way. We go for cardio check ups every 2 years now, and at the last one the doc said the only evidence of her having a heart problem is the scar on her chest! It's amazing what modern medicine (and the grace of God!) can achieve - even down here on the southern tip of Africa!

Lindsay - posted on 02/03/2009

im so glad to hear from other moms that are goin through the same thing i am!!! its relieving! My daughter was also diagnosed with DiGeorge Syndrome, & she gets calcium in every other bottle & she is still on oxygen. We have been home since dec 22. she will go back in april or may to have another surgery.

Lindsay - posted on 02/03/2009

My daughter peyton was born on Nov. 17th 2008 & she has this & NO we has NO idea, anything was wrong. She was immedialty airlifted to Arkansas Childrens Hospital from Louisiana. She spent 5 weeks there, had her first surgery on Nov. 26th.

Lindsay - posted on 02/03/2009

My daughter peyton was born on Nov. 17th 2008 & she has this & NO we has NO idea, anything was wrong. She was immedialty airlifted to Arkansas Childrens Hospital from Louisiana. She spent 5 weeks there, had her first surgery on Nov. 26th.

Vickie - posted on 02/03/2009

Quoting Sarah:

Thank you Kimberly, I appreciate it.

Do any of your children need a inhaler or updraft treatments when they have a cold or cough? Brendon has had to have an updraft treatment the last two night as he was coughing so hard that he would wake up in the middle of the night. And last night We (him and I) had to sleep upright on the couch upstairs, and  it was hard on me.  He slept well after the treatment, and  once he gotten to sleep (or so my mom tells me, she was up most the night.) He has two inhalers with spacers for the day. (we have two as he was in daycare for two months). I was just wondering if this has something to do with TOF or if it is the beginnig of a possible asthema (which his father has).

I hope all is well with everyone else. ~ Sarah 

hi yes sarah my son has an inhaler he worse in the winter months, he also has to sleep upright as he has difficulty in bringing up his flem and chokes alot my doctor has said he defo does not have asthma it just 1 of the things that goes with his condition if u are unsure though have a word with ur doctor xx

Amanda - posted on 02/03/2009

The same 2 days. It sounds like you were pretty fortunate too. When all of this first started it felt like my world was tumbling. Now life is getting so much better. I am very encouraged to hear of children playing sports. If my Savanna is built anything like me I would love for her to be involved in gymnastics.

Vickie - posted on 02/03/2009

Quoting Sarah:

Thank you! I sure I will have plenty of questions. Wow 3 surgeries. Brendon had his valve ballooned at a day and a half, then had his repair surgery at 4 and 1/2 months. the cardiologist tells me that he shouldn't need another valve repair/ replacment/ or by-pass until some where between ages: ten to teens. How old is your son? Did he have VSD (Ventricular Septal Defect? Brendon did. I see on your profile that you have 3 chlidren. Were you worried that you might have more children with conditions? I sometimes worry about that. I have to remember to not worry.  

hi my son just turned 3 yeah he had vsd, his first op was wen he was 5 days old he had a shunt put in that was a scarey 1 we didnt think it was possible to operate on such a small child, it took him a while to get better after this because he kept  gettin chest infections, his 2nd 1 was an emergey op he went blue 1 day rushed him to hosp and turned out his shunt he had in was blocked and he went in to heart faulire that was very scarry but was out of hosp in 2 weeks, his third 1 was a total repair the doctors warned us it was a big op but again was only in hosp 2 weeks after op, he had check up last month and he doing great at the minute been telt he not need next op till he at least 7 8 years old.i know what u mean by worrying bout havin other children with this me and my hubby were going to try for another 1 soon but after talking about didnt think we cud cope if it happend again ive spoke to doctors about it and they said id be treated as a high risk pregancey if i did decide to have another 1 but for the time being think i got my hands full at the moment ha, i do have 1 question for u does your soon get a lot of chest infections and colds my son is in and out of hosp with stuff like that in the winter, how ur little boy doing now x

Sarah - posted on 02/02/2009

Thank you Kimberly, I appreciate it.

Do any of your children need a inhaler or updraft treatments when they have a cold or cough? Brendon has had to have an updraft treatment the last two night as he was coughing so hard that he would wake up in the middle of the night. And last night We (him and I) had to sleep upright on the couch upstairs, and  it was hard on me.  He slept well after the treatment, and  once he gotten to sleep (or so my mom tells me, she was up most the night.) He has two inhalers with spacers for the day. (we have two as he was in daycare for two months). I was just wondering if this has something to do with TOF or if it is the beginnig of a possible asthema (which his father has).

I hope all is well with everyone else. ~ Sarah 

Kimberly - posted on 02/02/2009

My daughter was born in 2000 and we had no idea that anything was wrong.  She has had 2 open heart surgeries so far and will need more.  Feel free to contact me.

Sarah - posted on 01/30/2009

Wow. I'm glad to to hear that she is doing so well.

Brenon went to his 30mo. check up last week, and got the flu shot. Two days later I noticed a red (looked like a welt) area about 1/2 an inch from where he got his flu shot.I was hot to the touch, and rock hard, with a small cut/slit in the middle It was a Sat. So I called urgent care and the nurse said to come in. He has an infection in his leg, and they are not sure of the cause. He is on some antibiotics. We also sleep in the basment of my parents place and with the temp. being so low, It is colder in his room (even with heat being blown into the room). I had him sleep in my room last night which is alittle warmer, because he now also has a cold and is congested.

I hope & pray all is well with each of you & your families.

Amber - posted on 01/29/2009

Sarah,    Breanna's cardiologist has always said there might be a chance when she's a teen and more active that she'd need a valve replacement, but at 15, he now says maybe when she's twenty or thirty she might need one.  He does feel that with new technology coming out and the ability to do the valve replacement the same way they do heart caths, that it would be better to do the replacement before there's a problem rather than later.  He feels that even that would be in about seven to ten years.

Sarah - posted on 01/29/2009

Mary ~ Wow. That is great that she is showing no signs, and is on the swim team. It makes me feel better to know that other children with the same to similar condition are doing so well, and are able to do sports. It gives me hope for Brendon future, as he is such an active boy now.

Melissa ~ Happy B'Day Emily! Did Emily's doctors tell you that she will need the valve replacement between ages: 10yrs. to teens? We live in WI and that is what they told me that it will be for Brendon.

I agree. It is wonderful to talk with others who have a child with the same or similar condition. As they know what your are or have gone through. I guess I was blessed alittl in this department. When I was able to bring Brendon home and have my six week check-up with my obgyn, his nurse told me that she had a two year old son with the same condtion, and if I had any questions not to hesatate to ask. Unfortonately I moved and lost toch with her. So I'm glad to have contact with each of you. It's so encouraging. Thank you!

Jerilyn - posted on 01/29/2009

yes I know... even though I do belong to a group here in my province... but I still have not met one other family that has dealt with this condition too. I guess it also helps when you are dealing with families from Canada and the US.