Saving Little Hearts

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Emma - posted on 09/27/2013

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My daughter has TOF, she had a shunt and then a full repair, she is now 14 and in 6 weeks time she has to have her pulmonary valve replaced due to regurgitation, The regurgitation is very common in repaired TOF , but Josie is now having problems with her right ventricle, it has dilated too much and is now reducing the size of the left ventricle and arrhythmia has kicked in, which means we have to have the bloody open heart surgery again, HOWEVER , it is common , and in the future they say that all repaired fallots infants will be basically given a 'surgery ticket' which they hand in to their surgeon when they reach 14 years of age!!!

My advice to any TOF parent is ALWAYS go to follow ups, , had Josie been followed up and the valve regurgitation picked up when it was moderate not sever, she might have got away with a balloon valvuloplasty repair, no surgery. We were discharged from follow up by the Cardiologist in error, we didnt know any better and happily thought our daughter was in tip top shape, and do I feel bad about not questioning it? EVERY day.

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Whitney - posted on 09/05/2011

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My daughter Paisley was born with the Congenital Heart Disease Tetralogy of Fallot. She was airlifted to Lubbock, TX where we learned of her disease and were told she would have Open heart surgery by the next week. LUCKILY God stepped in, she did so great and amazed all of her doctors. Paisley was released from the NICU after exactly 2 weeks. She had CONSTANT check ups, but she went 7 months before having open heart surgery. God worked so many wonders in our lives and Paisley is now 15 months old and fantasticly healthy.:)

Sarah - posted on 11/23/2009

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Anyone out there have a child that is going through or went through encounters with atrial flutter??

Sarah - posted on 11/23/2009

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I strongly suggest a book called "It's My Heart" very helpful at breaking down medical terminology and preparing you for hospitals stays.

Sarah - posted on 11/23/2009

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Hello heart moms! I just wanted to give some insight and hope. I myself am a heart baby all grown up 27 years old and have started a family of my own! I was born with Tetralogy of Fallot. I am going to school to be an RN and hope to one day either be a flight nurse or a CVICU nurse. Feel free to ask questions I know what your babies are going through.

Tina - posted on 09/20/2009

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Hi everyone, our daughter Sarah was born with tetraology of fallot and discontinous pulmonary arteries. Her first open heart was done at 18 days old where they placed a BT shunt. Her second one was done at 11 months and she is 17 months now and really coming along. She has a G-J tube for feeding because of really bad reflux and that is always an issue. They say she'll need the third surgery next spring and they will attempt to close the vsd. It's so scary not knowing what is going to happen. Her vsd is very large and they say it will be rough on her. Her surgeon at Geisinger Medical Center is excellent and we are very fortunate to live close by. It is a comfort knowing that there are others out there. Anyone out there who's baby has had tetraology and had all the surgeries done?

Kayla - posted on 07/13/2009

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My son Wyatt was born with Down Syndrome and tetralogy of fallot. He had emergency surgery at 4 weeks. He has done great and they are saying he will only need one more surgery to replace his pulmonary valve. It is so nice to have a place where you can talk to other moms who have gone through the same thing. We came so close to losing him and now other than his fading scar you would never know anything was ever wrong with him. He is now 9 months.

Misty - posted on 07/12/2009

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My son Justin was born w/ hypoplastic left heart syndrome.He had all three repairs by age 3. He is now 8. in November the day before he turned 8 he went into heart failure
He did undergo another surgery and had been hospitalized for 5 months. he was very sick.the doctors are still talking about transplant,but for now Justin is home and getting better every day.

Stephanie - posted on 07/06/2009

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Hello, I have twin daughters and the youngest Lyla was born with mitral valve regurgitaion which turned into mitral valve stenosis. She has had two open heart surgeries and she is only 7 months old. It is so nice to know that there are other moms out there that are going through all this too!

Heike - posted on 06/30/2009

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Hi, our son Kurtis was born with Hypoplastic Left heart syndrome. He had his first heart surgery at 11 days old, second at 13 months and still requires at leaste one more. He had a treacheostomy and required ventilation until he was 7 months old. Has been treach free since February and doing great! He still has a g-tube, and on oxygen and has pt, ot/speech therapies 3 times a week, but is making great progress since his second heart surgery. He is such a great inspiration!

Kelli - posted on 06/26/2009

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Does anyone have a child with Tactile Defensiveness with severe pain getting dressed. My daughter has HRHS w/ Ebstein's Anomaly of the tricuspid and had three surgeries to correct by age 2. She has always had feeding problems but the clothing issue seemed to emerge when she was 4 and started preschool and has worsened every year since. She is going into the 2nd grade and it is at its worst. The OT doesn't seem to be helping much. I'm dreading the start of fall. The cold seemed to make things worse.

Jennifer - posted on 06/16/2009

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Hi! My son Garrison was born on May 4th 2006 with Pulmonary Valve Stenosis, Hypoplastic Right Ventricle and Hypoplastic Tricuspid Valve. He had hs first open heart surgery at 11 days old and he received a BT shunt. He did great and was thriving and getting stronger untill this past September. He was hopping around our couch and was out of breath. So he had his 2nd open heart surgery and they closed his ASD defect, tied off his BT shunt and he now has a transannular patch. They said his Tricuspid valve is deformed but not leaking yet! Yeah! Thank you so much for a place where I can talk to mom's that know what I am going through! He is now 3 years old!!

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Hi Jamie, I know somewhat of what you are going through.  However I don't know about the tubes etc.  I have a daughter (17 yrs old) who was, within the last 2 yrs, diagnosed with Restrictive Cardiomyopathy.  She is currently on 4-5 meds daily and has been on the heart transplant list for going on 2 yrs (in Oct. 2007).    Anyways!  I also have a carepage if you would like to go there for more info.  Go to www.carepages.com and when it asks you for search....type in kmusgrave.  This site is also good and informational!  Sheryl

Betts - posted on 02/28/2009

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Hello, moms of heart babies. Our daughter was born with the CHD Truncus Arteriosis. Basically she was born with no pulmonary valve, no pulmonary artery and a VSD. She has had 2 heart  surgeries (one at six days old one at eleven months) and one cardiac cath. She is now 4 and stable but is looking at another surgery sometime in the next year. We are blessed that this particular type of CHD can be managed with surgery, but it is a double edged sword in that she will have several surgeries in her lifetime.  She has a conduit implant that does not grow when she does. Anyway, glad to join in the discussion. 

Sarah - posted on 01/15/2009

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hi Tina

It definitely can be a very lonely and isolating journey being the mum of heart kid. That is why groups like this are so important - you need to know that someone else has been through it and survived sometimes. I had days (and still do!) when the weight of raising my daughter seems to heavy to carry .... and then she smiles :) And we are one of the lucky ones. It is amazing how much perspective you get as a person and a mother of these kids- I definitely gained a true understanding of what is important in life. But it can be a long and scary road a LOT of the time and the unfairness of your baby being sick and at risk is something we all have to deal with. But have to say I wouldnt swap her for the world ......

Tina - posted on 01/14/2009

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Hi everyone!  Our 6 month old daughter Brielle was born with Hypoplastic Left Heart Syndrome.  She had a rough time with her first surgery but has done really well since then including her second surgery.  I am so glad that I found this group.  I have had a difficult time adjusting to this condition and have felt very lonely.  I am definately interested in finding some new friends who can relate.  Thanks!

Violet - posted on 01/07/2009

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Quoting Misty:

My youngest daughter was born with Aortic Stenosis and had a cardiac cath at 18 hours old. She has done excellently. They expected that she would have to have another one before she was 2. She turned 3 in August and hasn't had it yet! God is good!


hey Misty , my 13 year old son also has aortic stenosis and regurgitation, he was only diagnoised 3 years ago , the shock was unbelievable.... it was discovered when he was having another surgery for something else,  he was an avid soccer player and we were told he was so lucky not to have just  died on the pitch, we had 2 years of just trying to come to terms with a diagnoises and him having to give up sport  with many a visit to a wonderful child psychologist to help us through, the last 6 mnts have been easier , but looking back now i feel i really dont compleatly understand the conditions,  i know they told me he had  a faulty valve and a narrowing in the main artery   but can you enlighten me on this condition any more?  the cardiologist has gone over it on more than one occasion but i think i just switch off and dont take it in properly ...... there was talk of the Ross procedure, ?????? i tend not to google things as they are not specific to individual cases and tend to give the worse case scenario!

Jenn - posted on 01/04/2009

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I am so glad to find this group. My daughter, Kate, was born with a lot of things missing in her heart, like the left ventricle and her pulmonary artery. She has had two surgeries and numerous caths at Lucile Packard Children's Hospital at Stanford- a wonderful place. When Kate was born, we were told she would not live and were given hospice care, but the wonderful people at LPCH have given us some hope, Kate is 19 months old!

Jaime - posted on 01/01/2009

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Hi all,



Our son Simon was born healthy but developed Dilated Cardiomyopathy (basically sick heart muscle) and at 4 months old, (August 1, 2008) presented in the ER with Congestive Heart Failure. We spent 4 months in the ICU at Children's Hospital Oakland and he's just been home for about 6 weeks or so. It's so fantastic to have him home...



He's on 6 meds and has an NG tube but we're hoping to get a G-tube this month (yea!).



So glad to find this group...

Sarah - posted on 12/31/2008

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Hi Jennifer. When Hannah was diagnosed with tetralogy of fallot they talked to us at length about chromosonal deletions - it apears to go hand in hand with the condition. She was tested for 22Q but was cleared of that early on. In the past 8 months of her life I have met so many families with babies dealing with chromosonal deletion or transposition that have noone else like them in the world to compare with, and all of these babies had some sort of cardiac complications. I saw some really incredible little kids dealing with more than any person should ever have to go through and what amazed me the most of all was their spirits - it just seems to shine out of them. I think it is because they have never had the opportunity to take anything for granted, least of all life. So much of my life with Hannah has been a struggle so every milestone, no matter how small, is celebrated like a major victory - because it is. I have gained new perspective both as a parent and a person throughout this journey and my husband and I have really had our priorities changed for what we want for our children and ourselves. There are days when I just want to cry it all out but then there are moments when I remember what she has taught me and smile - my bond and my love for her is fierce and powerful because I have to fight for her, something not a lot of others can understand. I wish you and everyone else the best of luck on your journeys.

Jennifer - posted on 12/31/2008

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My 4 year old son was born with tetralogy of fallot. His first emergency open heart surgery was at 21 hours old. His second was at 7 months and his third was at 2 1/2 years. He will probably have to have another in his mid to late teens but we will have to wait and see on that one. He also has an interstitial chromosomal deletion that they believe caused his heart defect but the geneticists have not been able to find another person with his specific deletion so they cant really tell me anything. He is also severly delayed in many areas. He is a wonderful boy who gets his point across even though he doesnt speak and makes us laugh all the time. Thanks for having a place to let me post his story.

Anne - posted on 12/30/2008

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Thanks to everyone who posted their stories below. It always helps to know you are not the only one. My daughter is 10 yrs old and is benfitting from occupational therapy which helps fill some of the physical development gaps she experienced when she was very young. She wears glasses and has slight dyslexia. She also experiences anxiety regularly; we think from all the procedures so early on. Even with all these little things and many others, she is such a gift to us with her loving and open nature. I am so honored to be her mom.

Sarah - posted on 12/30/2008

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My 8 month old was born with tetralogy of fallot which required open heart surgery at 4 months old and she has 2 more coming up in the first half of this year due to significant pulmonary blockage. It looks like she could be having seizures as a result of being on heart lung bypass which is a side effect of the machine so I am worried as they could mean we need to go the path of a pacemaker. It was only last week I foudn out that her first surgery was not as successful l so am really struggling with the thought of having to go through it again - some days it just seems like too much to cope with. We live in Australia and Hannah goes to the Royal Children's Hospital in Melbourne for surgery where we have 2 extremely talented heart surgeons who are getting some of the best results in the world for their work - they have the highest success rates of all. We are lucky they are here and that they are publicly funded so that all kids have access to the best possible treatment available.

Gemma - posted on 12/10/2008

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hi my 19mth old daughter was born with asd, vsd, pulmonary atresia which after a balloning changed to pulmony stenosis, has a small tricuspid valve. since birth she has had feeding problems so is behind in her size and development. she had a bt shunt at 5 days old but now has had it banded so has been through heart surgery twice and had 3 cathiters they told us she could be brain damaged but she has proved them all wrong she was ng fed but now has a gasostromy tube in her tummy and since having that done she has come on leaps and bounds and is my little superstar xx

User - posted on 12/02/2008

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My son was born with Down syndrome and three heart defects. One closed on its own during the first few months. The others were repaired with open-heart surgery two months ago. He is now seven months old and doing great! He has quite the scar to prove it. LOL

Misty - posted on 11/28/2008

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My youngest daughter was born with Aortic Stenosis and had a cardiac cath at 18 hours old. She has done excellently. They expected that she would have to have another one before she was 2. She turned 3 in August and hasn't had it yet! God is good!

Jennifer - posted on 11/20/2008

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Children's Hospital in Boston, MA gave and continues to give my son the best possible care. I would recommend them to anyone. I can't say enough about them. They have the best facility and the best Doctors in the world. They saved Owen's life. He was born with "L transposition" and "Epstiens anomoly" , two severe deformities that rarely are seen together. They performed a "Double Switch" surgery and gave him a pacemaker when he was 3 Months old. They told us if he didn't have the surgery he would not survive childhood. If you want the best possible care for your child, find a way to get them to Boston. If you can't find a way, contact me. I'll help you find a way.

Heather - posted on 11/19/2008

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I'm so glad you started this group. I've been looking for a place to talk about my daughters special needs. My daughter was born with half of a heart. She's had three surgeries and is still in need of more. It's nice to know there's moms out there that can relate.

Melissa - posted on 11/13/2008

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Hi! My daughter Hannah was born with a Total Anomalous Pulmonary Venous Return, she underwent open heart surgery at four days old, the operation was successful. Hannah suffered trauma from the heart surgery which in turn caused eye problems, Hannah has undergone 3 bi-lateral strabismus operations also. As well as some oral surgery on her molars, they came in with no enamel

Jennifer - posted on 11/11/2008

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Hi! My son Owen was born w/ CHD, and continues to amaze us and his Doctors w/ his progress!

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