Did you know before hand about your child's heart defect? Any family history?

Julia - posted on 11/06/2008 ( 73 moms have responded )

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Our heart child was a complete surprise. We have no family history in our knowledge of heart defects, and none of our children had had anything worse than ear infections. It really taught us not to take things for granted and was a huge reality check.



We thought we had a healthy baby until he quit breathing when he was ten days old. I remember rushing him to the doctor/hospital and thinking quite clearly that it had to be something simple. Heart defects never even crossed my mind. I remember our pediatrician rattling off a number of heart defects (at the time I had no idea), asking us if there was any history. I think I just stared at him blankly.



Anyway, I was curious how many of you knew before hand - I know some defects are fairly easy to catch on ultrasound where others, like TGA, or difficult unless you are really looking for them. I was also curious as to if any of you have a family history of congenital heart defects.

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Julianna - posted on 07/16/2013

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Holly I was 16 weeks pregnant, my first pregnancy when I found out my baby had a hole in his heart, they diagnosed it as tetralogy of fallot. It's normal to feel scared, sad, and confused as I was my heart goes out to you because I know how you must feel, Levine's children hospital is a blessing to my family. That's where my son had his heart surgery & I can tell you your in good hands. I will keep you & your baby in my prayers!

[deleted account]

Our daughter Lucy was diagnosed at her 2 week check up. She has Tetralogy of fallot and an absent left pulmonary artery. In those two weeks, she wasn't feeding, I'd been to lactation twice and they told me I had a lazy baby!

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Laura - posted on 03/13/2014

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I was born with TGA, and from what my cardiologist has talked with me about they really don't know yet if it is genetic. I'm currently 38 weeks pregnant I have been considered high risk throughout my pregnancy( but everything has gone perfect and I have no restrictions!) They did make sure to really check the babies heart to make sure he or she didn't have the defect. Which I'm happy to say he doesn't! In my family however, there were 2 "blue babies" who both died shortly after birth. My dad had a sister that died shortly after birth, and My Mom's father had a brother who came home from the hospital but died within a week or so,I think. Back then they really didn't know what was wrong with the babies though, so although both were heart issues, there's no knowing if either was TGA.

Julianna - posted on 07/17/2013

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You & your baby are in my prayers, I know how scary it can be. Take it one day at a time & stay hopeful!

Holly - posted on 07/17/2013

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We are at Asheville cardiology now and we are being told..aorta ventricular tunnel...only 130 known cases worldwide.. as well as hydrops now...we are give a 2 on scale of 1 to 10 for survial

Julianna - posted on 07/17/2013

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My son turned 2 in may. He's had 2 heart surgeries since then. Levine is a wonderful hospital, the doctors & nurses are amazing. they also have a group for kids who have heart problems, Levine's cardiac kids. You can meet families who have kids with the same heart defect as your child & just talk about your experience. They do a lot of events for the kids & families.

Holly - posted on 07/16/2013

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Julianna thank you for commenting..how old is your child now? We are wanting to meet more Levines heart familes we need to know that we are at a good place for our son..

Holly - posted on 07/01/2013

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Arelis Lopez..thank you for your kind words..I guess the not knowing is what's so hard..once again I see that we take so much for granted..I guess after 3 healthy children it never crossed my mind that anything could go wrong..so we take so much for granted..I've been mad, hurt, jealous and.questioned why?? You name it but now I'm just numb and praying for the best and thanking God for the many blessings that i have

Arelis - posted on 07/01/2013

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to Holly Morton ... you're doing great. just like any normal mother would. i cried and prayed and cried some more too with my son, the key here is prayer. but one day i was having a 3d ultrasound and my son smiled at me from the womb! that right there told me that everything was going to be okay, I already had faith that God would do a miracle and my son's smile that day was the "stamp" that the miracle was at hand. I will be praying for you and your baby that the Lord will give you the strength for whatever may come.

Holly - posted on 07/01/2013

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I am 21 weeks pregnant and have already been to Lavines childrens hospital in Charlotte NC to meet with a fetal cardiologist..we have been told hat our son has vsd, dysplashic aorta, CV dysfunction, enlarged heart, and fluid around.heart..they fear the baby will not survive the next few weeks of pregnancy and if he does he may die at birth..how do you prepare yourself for this?? We have put off buying anything And will not start work on the nursery..we have cried, prayed,and cried some more..we are lost,scared,confused..I guess i just want someone to tell me its all gonna be ok..

Idowu - posted on 06/23/2013

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Sure was helpful! My daughter is goin tru d same thing now nd most challenging thing is dat her surgery can't be done here in Africa, it has to b abroad.. Shez just 7monyhs old nd I'm a single mum nd scared as f***

Heather - posted on 06/10/2013

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I just came across this board feverishly googling heart defects. At my 20 week scan they found an issue with a hole in the wall that seperates the chambers (i think vsd) and also what they called mitral valve artesia. I'm just lost trying to find anything on this. I'm due 10/28 which is soo far away and I also have placenta previa. We are scheduled for an echo tomorrow, but i'm just sooo worried that i will be asked to make the hardest decision of my life...I have 2 beautiful daughters with no heart defects today. History includes my husbands side with mitral valve prolapse.

Arelis - posted on 05/14/2013

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I did find out before my son was born of his heart defect, it was devastating but also a good thing because I had the best doctors, I went to Children's Hospital of Philadelphia on time and they let me deliver him right in the special delivery unit. It's still scary, he is 3 years old now and doing great but he still needs his final stage surgery, the fontan. we have no family history of heart defects, except that i have 2nd cousins with heart defects and i dont think doctors consider them like immediate family.

Samantha - posted on 03/19/2013

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My daughter will be 5 in July. We went for oral surgery eval appt and they said she first must see a cardiologist bc her heart had a strong murmer. She has a 7mm ASD. They want to do the cath. procedure in May. I am scared beyond belief! My baby girl doesnt gain much weight and is so tiny. Will they be able to get thru the artery, will the device work, etc? Has anyone every went through this? Any advise? I feel like I may have a heart attack prior to May. The thought of her going through all this is devastating!

Neo - posted on 03/18/2013

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My 2 year old son is about to go for ASD operation on the 17 April! and I am terrified...
any mom who have some consoling words for me. I need moms who have been through that experience to comfort me.

Robin - posted on 09/08/2012

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I'm currently 23 weeks pregnant and at 22 weeks pregnant, the ultrasound tech said they may have seen something indicating TGA on the ultrasound. She said they also really can't see well because my baby keeps hiding down in my hips preventing them from getting a good picture. I'm emotionally preparing myself for TGA to be there and my baby to have open heart surgery in the days following birth. I'm so worried that my baby will die,even though it seems the majority of TGA babies survive and thrive. My husband and I haven't told many people and its very hard to be asked the question "how did your last ultrasound go?" and answer "fine" because my husband is not ready to tell people. How did everyone else deal with finding out before their baby was even born? All I want is to be holding my baby in my arms this time next year and not be mourning a loss.

Moira - posted on 04/07/2012

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Hi Julia we never knew before hand,Amanda was born normal,the day we were bringing her home the midwife said she looked blue?.They done tests and found Amanda had heart problems.She was very slow in feeding and would not sleep or stop crying.When she was two she had a full correction which was a success,but we lost Amanda for few minutes in intensive care,Amanda now has extensive special needs.She is 32years old now and has the mental age of a 6month,we have just been told she will need more heart surgery but they are not sure if she will be able to cope?We are devastated and are trying to find anyone who can help us.

Tammy - posted on 04/06/2012

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My son Wyatt was born with no warning at all. he was delivered and absolutly fine. He breast feed all I had to offer within seconds and ate and oz and half. they took him for a bath after his shots 2 hrs after birth. Then called me in my room and said thet are taking my son via ambulance to CMH stat. Informed me of "blue baby syndrome" and I could not understand how or why this happened we have 4 other healty children at home. He was taken to hospital via ambulance in a incabator box it looked like with all kinda of lines coming off of him. What should have been a very happy day was extremely sad. I had no idea if my son would make it. I was not staying in a hospital half way across town from him either my Dr. released me knowing I would leave any way. I was right there with my son 1 hr later. As the nurses where amazed I had giving birth a couple hrs before and there but this is my son and all my kids are dear to me nothing will stop me when it comes to my kids opsticles or not. He was seen at CMH and diginosed with transposition of the great arteries, pulmonary stenosis, and vsd. He at 4 days had a heart catheratization and at 1 month did a open heart surgery to put in a B.T. shunt. he has had lots of appts all kinds of test and he is growing slowly but he is a happy boy with no delays in development. He is to have his MAJOR switch operation @1 yr. with right around the corner and after 1 months in the hospital after birth I hope this goes smoothly. He is a fighter after all he is a Quinn and a Mc Clasky and McNally so this Irish lad is going to make it. As another story I read I agree their name may mean alot. Wyatt is a fighter (Wyatt Earp) and Christopher ( St. Christopher)While its scary and sad I know he will be fine as we have some of the best Drs. in the USA @ CMH.

Catherine - posted on 04/26/2011

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Thanks Jessica for sharing your experience with me - I know what u mean about not letting your guard down.. we got some encouraging news today but I don't want to get too excited just incase!? Lets hope I have a little fighter on my hands like u clearly do ;-) x

Jessica - posted on 04/26/2011

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We did not know our daughter had any problems until a week befor my due date. She developed an irregular heartbeat. SHe was born with Dialated Cardiomyopathy. We have no family history of heart problems so this came as a complete shock to us. RIght after she was born i was only able to touch her face quickly before they were rushing her out of the room and calling for an imediate transport to a hospital better equiped for sick babies. when my daughter was born her heart was only pumping out a maximum of 17% of the blood. a normal heart pumps 65%. After a few weeks of them testing her to find out the cause of her heart problem they finally let her come home and a few weeks after that, we finally got the answer we needed. She had a small deletion in her chromisom 6 tab 2. that is what caused her cardiomyopathy. She is now 7 months old and doing better than all her doctors expected. The first cartiologist told her father that he should prepare to out live his daughter. He was at one hopital with out daughter and i was stuck an hour away in another. although she is doing amazingly right now, we cannot let our guards down, becuase there is so little information on her genetic deletion, that they cannot predict anything. we can only hope she continues doing this well and her heart does not weaked at all.

Catherine - posted on 04/23/2011

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Thanks so much Heidi - I really appreciate your support & I will continue to try to put my trust in God :-) x

Heidi - posted on 04/23/2011

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Catherine, I don't know if you believe in God or some sort of higher power...but I know in our case, I had to learn very quickly that I didn't have the power to control what happened with Liddy. As a mom, I want to fix all of my babies' hurts and to protect them from all harm. That's what mommies do! But I had to come to a place where I let go of the constant worry and had faith that God would do whatever was necessary to take care of her. I've been in your shoes. Its a horrible place to stand. And as the weeks passed and we got closer to the time for her to be born, although I was so excited, I was also scared to death. While she was living off of me, she was safe and sound. The real trouble could start when she had to survive on her own. But again, God didn't let me down. She was born in much better condition than we were led to expect! Sending prayers your way...for strength, for peace, for a safe delivery, and a beautiful baby (which is a given!) If you ever need anything (an ear, a shoulder, prayers) let me know!

Catherine - posted on 04/23/2011

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As you may have seen from my other thread, I'm now 22 weeks pregnant & my baby's just been diagnosed with 2 VSD's, Aortic Stenosis & a conduction problem. I also have no family history of heart problems x

Sylvia - posted on 04/18/2011

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not a clue was such a shock his had 3 holes closed but has 2 faulty vaulves still on going

Alyce - posted on 04/16/2011

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I found out my son had Ebsteins Anomaly at 20 weeks. My son was born and that was a miracle and he is now 16 an even better miracle. He hasn't had any surgeries or major testing done. Nothing more stressful than an Echo. My sister in law gave birth 2months and 2 weeks after me and her baby was born with TGA. She never knew he had a heart defect. Unfortunatley God called him home when he was 12 days old during his surgery. You will be missed LIL Hagan! Other than these 2 children we dont have any family history that we can find.

Heidi - posted on 04/16/2011

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oh. My daughter has a complete AV canal defect, and consequently only has one valve on her heart.

Heidi - posted on 04/16/2011

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We knew beforehand. No family history of heart defects. I'm younger than the increased chances for Down's. It completely took us by surprise. But we did receive our diagnosis from an ultrasound. The first indicator was that she only had one heart valve. Thankfully, I was in school and taking Anatomy 2, and weirdly enough, we were studying the heart right when we found out. It helped me a lot to know exactly how the heart is supposed to function and therefore, I could understand more clearly what was wrong with Lydia's. Plus I had really great professors who were willing to answer questions I had about her specifically! haha I think I learned more about the heart than I did any other organ system all semester!

Katy - posted on 06/30/2009

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We didn't know beforehand, we didn't know until our son was 6 months old. We never knew about any heart defects in our family, though shortly after my son was born, when my grandfather passed away we found out he had something similar to what my son has, but was never diagnosed until he had had a heart attack 3 years before he died. No one was told about it until after he died (strange family huh). I don't know the exact defect but something along the lines of things were backwards.... kinda like with my son.

Bobbi - posted on 06/11/2009

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I have 2 heart kids. Both Hypoplastic Right Hearts. I knew about both of them at 20 weeks. My son is going to be 4 in July and my daughter turned 2 in Feb.

No family history that I know of.

My kids are finally done with all their surgeries! Yay! They are both doing great!

Leslie - posted on 06/04/2009

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I had no idea that my son had a heart defect until he was born. I have a family history of Mitral valve prolapse but nothing as severe as Garrett's. Garrett was born full term with an easy delivery. He was 8lbs 12oz, 21.5 inches long. The pediatrician heard a murmur during the intial exam after delivery and determined that Garrett had a defect of some sort. The doctors decided to life flight Garrett to UNC Children's Hospital 2 hours away. We soon learned that he had TGA, VSD, ASD, Straddling Mitral Valve, Pumonary artery stenosis, and a PDA. He had been placed on Prostigladin before the flight and remained on it for 7 days then he underwent surgery for BT shunt. At 8 mos old we flew to Childrens Hospital Boston where Garrett underwent surgery to repair his heart. They were able to perform a Rastelli two ventricle repair and switch the great vessels. They had to put in a conduit(graft) vessel for his pulmonary artery. He has been doing great over the last 3 years, however the graft needs to be replaced. We are having surgery again on June 17th at UNC Children's Hospital to replace the graft vessel and close the ASD. We have been greatly blessed to have found wonderful doctors to take care of Garrett.

I have actually thought about this a lot and have decided that I was glad that I didn't know before his birty. I had a wonderfully easy pregancy and worked up to the day I delivered. I would have just worried myself sick thinking about it had I found out sooner. It was very difficulty to handle at first and at times was completely overwhelming but everything has worked out well in the end.

[deleted account]

I found out at 21 weeks- no family history- quite a shock- but he is doing well and has no surgery as yet. Praise God! He has HLHS, ASD and DORV. It is all wroking together to support his life? who would've that possible?!

Jen - posted on 06/03/2009

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No family history on either side but my husband and I do have a baby with a rare heart condition...we were lucky to find out at 20 weeks about it....we were givin the option to terminate but we said no way...so we had many ultrasounds to keep an eye on our little guy and today he is clinically healthy and will have surgery in July...he actually doing better then the doctors expected! we are very proud of him

DIanna - posted on 06/01/2009

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Every single ultrasound I had with Lily turned out - fine. They told me I was expecting a healthy, normal baby.

She was born with a large VSD (She has surgery in 24 days), PDA didn't close, enlarged right side of the heart, aortic valve is bicuspid instead of tricuspid.

She also has arachnoid cyst on her brain, and heterotopic gray matter cysts in the ventricles of her brain.

History of heart defects and brain tumors in the family.

Rachel - posted on 03/20/2009

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I have had no family history with heart problems so there was no cause for concern during my pregnancy although, our second ultrasound at 18 weeks, they had trouble getting a good view of the heart. They asked me to come back twice more to get better pictures but eventually summed it up to the baby moving around too much and gave up. At 31 weeks, I had premature rupture of my membranes...in simpler terms, my water broke spontaneously. Later, after some testing, they realized I had an infection in the placenta which is likely the cause of the rupture. They kept me in the hospital on bed rest for about a week, giving me steroid shots while I was on magnesium sulfate to stop my labor. Finally, at 32 weeks, they took me off the magnesium and I had her that afternoon. She was born at only 4 pounds but looked healthy as can be. They showed her to me but couldn't let me hold her considering how young she was. They immediately took her the NICU and about 4 hours later, the doctor came back to break the news. They initially heard a heart murmur so they decided to do an echo to get a better look. They discovered what they call Double Inlet Left Ventricle, transposition of the great vessels, and pulmonary stenosis. They transferred her directly to the University of Maryland for a specialist. I was released from the hospital 24 hours later and my first time seeing her was with an anesthesiologist describing his procedures for anesthetics. I had no idea what he was even talking about or why until the surgeon came in to tell me that they were going to perform surgery on her the following morning, at only 2 days old. Because of the way her heart had developed, she didn't show any cyanosis because there was a hole between her bottom chambers that was allowing the oxygenated and unoxygenated blood to mix. It that hole hadn't been there, she would not have survived past her few first hours of life. During her first surgery, they put in a BT shunt to redirect the blood flow. She stayed in the NICU for 73 days before she could come home...one week before Christmas. It would have been earlier but she also came down with NEC (necrotizing enterocolitis) and they had to remove a portion of her intestines that the bacteria had killed off. They left her intestines open for 6 weeks in a colostomy bag, then closed her back up. Once she had healed and they were sure that she was eating and processing food correctly, they let me take her home. Six months later, she had her second surgery for the bi-directional Glenn and everything went fine. She was released after about a week but at her six week follow up, they found pericardial effusion. The area around her heart was filling with fluid and if we had waited another few days, her heart would have collapsed from the pressure. Another few days in the hospital to drain the fluid and she was back home again. We've been on regular checkups about every 6 months. She has a minor tricuspid valve leak but it hasn't changed in over a year so the doctor is not concerned with it at this point. We're scheduled to have her third surgery, the Fontan, in the next 9 months to a year. I'm hoping for the best. I have two other children who are perfectly healthy and they help her stand strong through all her procedures.

Brenda - posted on 03/18/2009

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I forgot to say that I had 3 other children, and my husband had 2 other children before we had Casey. None of our other children have any kinds of heart problems at all.

Brenda - posted on 03/18/2009

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Neither of us have a family history of heart defects, and we had no idea. I was 40 when I had Casey, but everything was fine. He weighed 9 lbs 5 oz and was the picture of health. He grew like a weed and was in like the 90th percentile for height and weight the first few years. His check-ups were all great. When he was 4, he started saying "his breath hurt." We have a good friend that is an RN, and when she listened  to his chest she heard a murmur. We ended up in Lubbock, Texas at a pediatric cardiologist, and he diagnosed Casey with membraneous subaortic stenosis. We felt gut-punched, to say the least, but this is a defect that can be corrected with surgery at the appropriate time. It was such a surprise because he was the picture of health. Since we know about it now, it is not life-threatening, and does not affect him too much at this point.

Ame - posted on 03/18/2009

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Thankfully NO !!!  If i had known about my sons TOF, I know for a fact I would have worried even more and it would of added to my list of worries...



I found out when he was 2 days old and I was being discharged from the Hospital, recovering from a c-section (fortunately I recover very well from c-sections) he is my 2nd child. We found out after my sons surgery that one of my husbands cousins had surgery for COA at 15 years old......



 

Ashlee - posted on 03/18/2009

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My son was born full term, and we did not know of any heart defect prior to having him. At about 12 hours old, he was a little blue, a concerned nurse took him to the NICU. Her and a doctor came back, and he was guessing that it was Trasposition of the Great Arteries. Our son was transferred to Seattle Children's Hospital, where they confirmend that is was Transposition. He was there for 10 days before they performed an Arterial Switch. It was the most intense situation as a mom, im sure you can all relate. Before this, I had never heard of a newborn baby having open heart surgery. But he is almost 16 months old, and doing great! We only have to go in every 6 months now for check ups! Also there is no history of this in my family.

Cher - posted on 03/17/2009

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I had a bad 2nd pregnancy with lil weight gain ... after numerous scans my medical notes were removed from me at 7mths ... I was constantly in and out of the drs sayin something wasnt right and other than the drs sayin my baby was small for dates, they didnt seem concerned. Andrew was born weighing 8lbs 8ozs on 7th April 1992 after a 2 hour labour. Everything seemed ok and we went home. However, Andrew lost 2ozs in birth weight but never gained it back even at 6 weeks of age. The midwife believed he had a milk intolerance and shipped us too our local hospital. After 10 hours of tests they scanned him a found a huge hole. After going too London for further tests Andrew was diagnosed with ASD,VSD, Straddled Mitral Valve and Hypoplastic Left Ventricle (DIRV - Dbl inlet right ventricle). He had a pulmonary banding at 7 weeks of age and then 1st part of the Glenn Procedure (redesigned Fontan) at 5 1/2 yrs of age. Andrew is now a thin but tall 16 yr old. His heart is funtioning very well and altho he gets tired very quickly he is healthy. His stats are a straight 87% and given he shouldve had completed the Glenn procedures at around 6 yrs of age, the hospital is thrilled with his progress. Hes due some cardiac tidy-ups soon, too cauterise stray vein growth but other than that all major procedures have been postponed indefinately.



I do believe tho that our local hospital was "aware" of his heart defect, but they failed too inform someone higher in charge too get Andrew the best start in life. Other than that tho i cannot fault his care thus far.



I have had 4 other children after Andrew and all have been healthy children with no hints of any health issues, altho we were advised we had an increased risk. We had no family history of any heart defects either, altho enlarged hearts in elderly members (which I understand is relatively normal).

Michelle - posted on 03/17/2009

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I was only 22 years old...first baby and went in for my weekly check up at 38 weeks along when all of a sudden we heard a irregular heart beat.  They took me to the hospital right then.  We delivered her by c-section and after that she was seen by pediatric heart specialist.  It was then brought to my huband (boyfriend at the time) and I that she only had 2 chambers to her heart and missing a valve.  How they missed this on my ultra sounds beats me!!!  She had to get rushed to another hopsital for surgry and made it through her first one...however the shunt they put in was too small so they needed to go in again and try to fix it...she didnt make it through her second surgry.  We have no heart problems in either of our families and were completly thrown off by this.  We now have 2 little boys that were healthier than ever...so are blessed and now have a little angel that over looks all of us.

Donna - posted on 03/11/2009

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hi yah i found out that my daughter had a heart problem at 21week scan they tell u wot ure babys sex is they told me "they couldnt see my babys left side of her heart". It woz confirmed the very next day at Guys Hospital in London  that my baby had hypo-plastic left heart syndrome my whole world crashed around me i woz only 18yrs old. Theres no heart problems on my side of the family but when i woz  7months pregnant i found out that my daughters fathers family had heart problems all the way throu there family. Chloe-louise woz born 15th december 1998 2wks early normal birth, then 2days old she had her first op , 11months old she had her second , then finally had her third when she woz 3yrs old and now the age of 10 she doing well.

Dawn-Marie - posted on 03/01/2009

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I do not have a family history of CHD's. However when I was pregnant with my twins my Peri walked by during one of my stress tests at around 20 weeks, she said it sounded like our daughter was having PAC's. She sent me to the Childrens Heart Hospital and they ran tests to check on her. The Dr said it was PAC's nothing to worry about would prob go away after birth. After birth we found out she only had 3 leaflets, she had bicuspid aortic valve with bottlenecking (thickening) and she has pulmonary leakage now as well. She is 16 months old.

Belinda - posted on 02/27/2009

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no we had no family history either, we were lucky I guess(well you know!) that we had a great sonographer at the Mater Mothers who picked up the every sp slight heart defect called Tetralogy of Fallot and found it at 18 wk scan, even the specialist was suprised! So with regular scans we were completely aware and prepared for our special Lleyton to be born and come out PINK. The reason for the thorough scan was we lost a bub at 20wks due to brain problems and had the head sonographer to scan our little man at 18 wks-ever so grateful but scared also.



Belinda

Leighann - posted on 02/23/2009

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Our daughter had a blood test to see if her heart defects where genetic and it wasn't , it was just something that happened they said,they didn't pick it up on ultra sound either in fact i have it on tape them pointing out her 4 chambers even though she only has 2, of cause i blamed myself for doing or not doing something when i was pregnant, but i couldn't do that for ever other wise i would not be any help to her though her journey,and she has a long way to go yet .

Natalie - posted on 02/08/2009

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My daughter was born with 3 holes in her heart. She had open heart to repair 2 of them at almost 3 months (and is a happy, healthy little 4 and half month old now;)). We don't have any family history of heart defects and had 4 ultrasounds during pregnancy. They even spent a considerable amount of time looking at the heart (bloodflow, etc.) and didn't catch anything. We found out when she was 3 days old because she had an extremely loud murmur.

[deleted account]

My 3rd son was diagnosed with TGA at around 21weeks during my level ll ultrasound. I was 36yrs old, and didnt' want to do an amnio, so requested the level ll ultrasound. Thank god we knew so I could give birth at NYPresbyterian in NYC where they are able to give him the best care. It was very difficult finding out early, but I believe it saved his life.

Amanda - posted on 02/02/2009

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My daughter's condition was found at 18 weeks and we were 20 weeks when we had the level II ultrasound.  Her conditions are DORV, TGA, Hypoplastic left ventricle, and stenosis of the mitral valve.  We knew ahead of time and heart deffects definately run in my family.  My mom had a son who passed at 12 weeks whom was born with a 3 chambered heart.  She had surgery at 2 months and came out of surgery without the respirator.  Words can't explain our gratitude for this special blessing named Carolyne Mahala!!

Rachel - posted on 01/29/2009

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We found out my daughter had AVSD (Atrial Ventricular Septal Defect...basically 2 large holes in her heart) as well as 2 faulty valves, when I was 5 months pregnant with her. I was induced at 38 weeks as they were worried she woulnd't make it any farther. When she was born (5lbs 9oz) she spent a week in the NICU and went into heart failure (slept all the time, didn't eat, threw up alot, ect) 1.5 later so was hospitalized again. She had an NG tube 24/7 to be able to eat (we had to change it ourselves every other day...blah), was put on 2 meds (Aldactazide and Digoxin). She was losing weight, her heart beat had the strangest pattern you've ever heard. At 3 months old and barely 8lbs, she had open heart surgery to repair the holes and the valves. Surgery was successful thank goodness. One hole they were able to pull enough of her own tissue to fix and the other has a gortex patch). She's now a happy and healthy little girl. We'll have follow ups till forever to make sure she grows into the repair properly and that the one stitch in the left valve doesn't come out. They can't guarantee she won't need surgery again...I'm I'm staying positive and saying she won't go back. It was a stressful time especially with staying at the hospital and not being home with my then 2 year wondering why baby was not coming home, and why he had to stay at grandma's and where maman and papa were all the time. I felt so guilty.



We have no family history of congenital heart defects but my daughter was diagnosed with Down Syndrome (also no family history of this). Downs kids have a 50% chance of haveing heart defect.

Kerrie - posted on 01/28/2009

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both my sons were born with Prolonged Qt or Romano Ward syndrome,it carries a high risk of sudden death,and affects there ability to become involved with activities such as p.e when they reach school age,they will have to sit on the sidelines and watch just like i did, my condition is genetic but the chances were 50/50 of my baby having the defect,turns out my odds were higher than expected,i was the first in the family to have more than 1 child born with the defect,it is a very worrying thing to live with and it upsets me they have to live a restricted life like me but i tell my self that everyday is a milestone we have past,my first son was born via an emergency section because he was having heart trouble in the womb,my 2nd was planned as his heart rate was also following the same pattern in the last few week of pregnancy,we have 6 monthly check ups but so far there dose of beta blocker is regulating any abnormalities.

[deleted account]

we didnt know anything about my daughter till she was born. she has a rare genetic disorder that causes her heart problems

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