Please help. My daughter has to have open heart sergury. Im so scared!!!

Britney - posted on 08/14/2010 ( 25 moms have responded )

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My daughter is almost 3 months old. She has Mowat-Wilson syndrome. With this she has quite a few heart problems and other health problems. We were told that before she is 18 months old she will have to have heart sergury. I would like to hear any stories about infants having this sergury. I need to hear the good and bad details so i know what to prepare for. Thanks in advance.

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Valerie - posted on 08/14/2010

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My son was also born with Down syndrome and a heart defect. He was born with an AV Canal defect so he had 2 holes and where he was supposed to have 2 valves (mitral and tricuspid) he only had 1. We knew prenataly and knew he would have to have surgery. They hoped to wait until he was 12 lbs and 6 months of age but he fell into horrible heart failure by 2 months and they decided they would operate at 4 months but then they moved it to 3 months at the last minute because he was so sick and stop responding to the medications. He was 11 lbs so I felt good that he was close to 12 even though he was still so young. The plan was to repair everything in one surgery and hope he wouldn't need another. His surgery was about 6 hours long because after they took him off the bypass to do an echo while he was still open they decided to add another stitch in one of the valves so they put him back on the bypass and finished up. When he came out of surgery he went to the Cardiac ICU and we got to see him about 1 hour later. I think he was already off the ventilater but tons of wires (which I was used to from him being in the NICU and having a surgery at 4 days old). The dr thought he fixed everything well and Joey would do great, but a few hours after coming out of surgery he was bleeding out (he had too much blood coming out his drain tubes) so they opened him back up in his room in the ICU (they close off the ICU while they do this) they fixed the bleeding and then we got to see him again but this time they kept him on the ventilator and more sedatives. I was scared to go home that night to sleep, but they didn't want you to stay in his room so I knew I would get more sleep at home and the dr said he thought everything would be fine. The next day when I returned he was off the ventilator and looked pretty good, but he was restrained (his arms were tied down) because he was pulling his leads off which I understood but it was hard to see your 3 month old restrained to a bed. The week and half before surgery Joey was being fed by and NG tube from the heart failure making him too sick to eat enough but I wanted him to come home eating orally since I knew he could do it. So when he got to eat he ate orally. I had been pumping so he got my milk and drank it all up. He was doing great except for his kidneys not working right and his blood pressure was too low. They said these were both pretty normal and should start working again after a bit. But then his peripheral IV in his foot stopped working (he needed this to move out of the ICU) so they tried to put another one in and he got really upset and raised his blood pressure so much that he blew a stich that created his mitral valve, they knew this after doing an echo since his breathing got worse after. This dropped him back into even worse heart failure than before and they didn't even get the IV in. They tried to medicate him and watch him hoping he could come out the ICU and go home before they repaired it again. They said they wanted to wait as long as possible to do the repair because the success rate would be higher. Well 8 days after his 1st surgery they had to open him back up again and repair the mitral valve. They said it was a life saving surgery and that they might have to put an artificial valve in and that, that was a last resort and might not work too. They prepared us for the worst. They were able to fix it without the artificial valve and Joey got to come home after one more week in the hospital. The hardest part that time was they had him on paralydics with the sedatives for 2 days so he wouldnt pop that stitch again and they told us not to let him cry -way easier said than done, but we managed. We had a few other complications along the way but he made it and came home without the NG tube. He did end up needing it again though and needing a Gtube placed later. He was still in some heart failure for almost a year while his heart tried to figure it all out again. We are right now weaning him off the heart med enalapril and we are hoping to take out the gtube in the next month. He has been eating and drinking enough without it. He is now 15 months and doing great. You would never know everything he has been through by looking at him. They just told us they think he may never need another surgery just a small possibility now and he does have a hernia they are watching from the surgery too but all no big deal now. So no matter what happens everything will hopefully work out and get soo much better. I wish you luck and you are her mother and will do fine no matter what, you will cry but you will smile too. I always liked something a friend of mine always said, "This to shall pass" always kept me going knowing it would be over eventually and would bcome a memory. Email me at vo1val@sbcglobal.net if you need anything else or just someone else who has done it!

Chrissy - posted on 10/19/2010

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My husband was born with heart defects (double outlet right ventricle with pulmonary atresia) and has had 4 surgeries growing up. You can do this, mom! Just take it day by day and you will get your girl though it. The technology of heart surgery has come so far since my hubby was born (1965) - it is really amazing what they can do now, and how quickly the kiddos can recover after surgery.

Christina - posted on 08/14/2010

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My son was born with a ventricular Septal Defect what that is in the lower Ventricular is a wall and that wall seperates the blood flow between the the two halves of the ventricular part of the heart. If there is a hole in that wall blood flow will still go thru as usual but also go thru that hole and into a repeating cycle of flowing thru again. With this defect my son also was diagnoised with failure to thrive at 6mnths old he only weight 10lbs when he should've have at least weight 15lbs-18lbs. His predtrician put him in the hospital on March 1st,2009. We stay at the local hospital for 4 days til we were transfered to University of Virginia Childrens Hospital And me and my mom stayed there for 3 weeks. They treated us good , If it wasn't for the Ronald McDonald house we wouldnt have a place to stay cause we didnt have money we were living off of foodstamsp and medicaid. The day of the surgery I will never forget though. We had family from all over there My sick grandmother who was walkin witha walkerand is on oxygen was even there for the surgery . 6 long hours we waited, the surgeon was nice enough to call and tell us he did well thru out the whole thing. But When it came time to see him I had to have someone come with me. That person was his father. I nearly fell to tears when I saw all the tubes going in and out of his body and the IVs. He had 5 IVs,2 tubes in his chest,one in his mouth,and a cathateuar. and when he woke up and saw me even with the tube in his mouth he cried cause he was happy to see us.

Renee - posted on 08/14/2010

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Hi Britney, My name is Renee. I have a daughter who was born with Down Syndrome. With that usually comes heart defects. She was born with a VSD or hole between her 2 ventricles. At first the doctor thought it would close on its own, so he was just monitoring her every 3 months. At age 5 months though, she had bronchitis and that was the beginning of her heart going downhill. She spent the next couple of months getting sicker as each day passed. Not to scare you, but my daughter stopped breathing several times during this time and required CPR. She was in full congestive heart failure by the time she was 7 months old and it was decided that she definitely had to have her heart fixed. At 8 1/2 months old, she went into surgery. She went into surgery at 9 lbs 8 ozs. She was so tiny. I was terrified but I knew we had no choice but to do this surgery. When the nurses took her from me, I didn't know if I would ever see her again. They had to stop her heart for about an hour and a half in order to repair the hole. The nurses were wonderful in keeping us up to date every step of the way. I thankfully had my family there for support and hundreds of others praying for us. When she came out of recovering and headed to the PICU, I was able to ride in the elevator with her. She looked very bloated from all the fluid they had put into her during surgery and she had so many wires and tubes coming from her and she was still on the ventilator for breathing. Up to this point, the doctor said everything went well and there weren't any complications. Once the nurses got her settled into the PICU, we were able to see her. She was still sedated so she wouldn't pull any of the tubes and wires from her. Despite the sedation medicine, she fought through it because she didn't want the ventilator in anymore. That was hard to watch, knowing I couldn't pick her up yet and all she wanted was to breastfeed. I finally got to hold her the next day in the evening. When she was placed in my arms, she settled right down and fell asleep. I remember not moving for over 3 hours, just so she could get some restful sleep. She was a fighter despite being sick. The care she received during all this time was incredible. She had the same 2 nurses the whole time she was in the PICU. They worked 12 hr shifts and she was their only patient. They explained everything to us and what each wire and tube was for. They told us what meds they were giving her everytime they gave her something. The doctors checked on her quite often. So despite this being one of the scariest moments in my life, I felt comfortable and was put at ease. She did have one complication...she developed a blood clot in her right arm in the artery. They thought they might have to go back into surgery to remove it, but they tried clot busting medicine first and that was all that was needed. She graduated to a transition unit 4 days after surgery and went home after a week. It took her about 3 months to fully heal and for everything to work right and get off all the meds she had been on. She finally doubled her birth weight by her 1st bday. She was behind in her development but it only took 9 months for her to go from laying on the floor to sitting and walking. Lots of therapy, but she was so happy and as fiesty as she always had been. She is now 14 yrs old and has not had problems with her heart since that time. It is checked periodically, but shows no signs of any problems and will probably never cause her any problems in the future. I know all this sounds scary and believe me it is. With the advances in heart surgeries these days, your daughter should do ok. That is not to say that there aren't any risks. As with any surgery, there is always risks. I don't know where you live, so can't give you any referrals as to where we went, but I suggest that you research the doctors in your area. Find out how many of the types of surgery your daughter will need that they have performed and the outcomes from those surgeries. Ask to talk to other parents who have gone through the same thing with these same doctors. Write down every question you may have and bring it with you when you take her to the doctor again. Keep asking questions until you feel comfortable and are understanding what to expect. My daughter has had numerous other health problems since that time including 2 more life threatening illnesses but she has made it through all of it and I still ask questions at every appointment. I push for things when I am not satisfied. I am her voice just as you are your daughter's voice. Make sure to lean on others around you for help and support. Take moments for yourself too. You need to keep your strength up, as some days will seem like the end of the world. Don't be afraid to cry, get angry or even to laugh. I hope I haven't scared you too much. I had a pretty positive experience, but I do know people who haven't had the same. Heart surgery is very risky but as I said before, the advances they have made even since my daughter had her surgery are incredible.

Take care and I will be praying for you and your daughter. Should you want to "chat" further my email address is theparksmama@hotmail.com. Keep us posted as to how things are going.
Renee Parks

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Tina - posted on 12/29/2012

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Hi Britney,

I realize that your post is a few years old and hope that your daughter is doing well. I am 33 years old and had to have open heart surgery at the age of 4 due to mitral valve stenosis. The surgery went well and I have not had complications since. I am now a few weeks pregnant with my own baby:) Based on stories my parents have told me about their fears and challenges with my health issues, I know that you must have been extremely scared and overwhelmed. I wish you and your family all the best!

Best regards,
Tina

Ginger - posted on 10/16/2010

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Hi Britney My daughter was born with Down Syndrome and had 4 major heart defects. She had a hole between all four chambers, one valve instead of two, and her pulmonary artery (supplies oxygenated blood to lungs) was almost completely closed off. She was airlifted the day she was born to a hosp. 4 1/2 hours from our home to Louisville, KY because of low oxygen (O2) levels where she stayed in NICU for 9 days till she was eating what they wanted her to be eating. She was sent home with us knowing that she would eventually have to have heart surgery but they wanted to wait as long as they could. This is graphic and may disturb you but this is her story and I believe a worst case scenerio but is also a success story!

At 1 mth she was put in our local hosp. then transferred to hosp. 1 1/2 away to a PICU unit because they thought she had RSV which turned out not to be thankfully. After being there near a week she was scheduled to go home in a couple of days so my mom came to stay with me at hosp. and my husband went back home to work. The next morning my mother went to see her and was kept from going in because she had coded. All because she did not like anyone to change her diaper except us and the nurse ignored the Dr.s orders to only let us change her as she thought she was helping by letting us sleep longer. They planned on airlifting her to Louisville so my mom and I packed up and headed there while my husband, my dad, and my husband's parents left from home to meet us there. Mom and I got halfway there when they called us from the plane to tell us they could not transport her because they could not get her stabilized enough to fly. We turned around and went back with no way to contact my husband because he did not have a cellphone at that time. We made it back and my husband made it to Louisville only to find we weren't there and neither was Kylee! Needless to say he called wanting to know what was going on and I had to tell him the bad news all the while the hosp. it trying to decide what they are going to do. I talk my husband into staying in Louisville because I want him there if she does get transferred and me here if she doesn't if something were to happen to her. Finally Louisville decides they will fly a Dr. to come pick her up and fly with her she is so critical. They have only done this one other time we were told. As the Dr. sits my mother and I down they do the same with my husband at Louisville and precede to tell us that they do not believe she will make it to Louisville as she has already coded six times! I don't know how to explain this other than motherly intuition but I never once thought that she would not make it even after them telling me this and I was right. They airlifted her and several days later and a few days later at 2 mths she had her first heart surgery where they placed a stint to bypass the pulmonary artery to allow more O2 to get to her lungs. Three days later she had her second heart surgery to put a larger stint in as the first was to small. A day later she was put on ECMO a heart and lung bypass machine (takes the blood out of the body and bypasses the heart to allow it to rest and oxygenates the blood before putting it back in). Her surgeon got back from being out of town for the weekend and was not happy that she had been put on ECMO because it is not a good machine to have to be on as the longer one is on it the harder it is to get them off and it can cause organ failure which is what starts happening to her after only three days of being on it. She had to go on dialysis for kidney failure but is able to come off of it pretty soon after being taken off of ECMO. At one time we couldn't even touch, talk to her, or touch her because when we did her heart rate would skyrocket and her O2 sats would plummet. So they put earmuffs and little shades on her eyes and this went on for two weeks before we could touch her or anything! This was truly an agonizing time! We counted over 20+ IVs going in at one time. It was truly overwhelming! She spent a little over 2 mths in the hosp. that time with almost 2 mths of that being in isolation in PICU with two nurses around the clock. She came home from this trip on O2, oxygen saturation and heart monitors, and a NG (nasal feeding tube) as she was not eating enough and we had to feed her through it. I also had to learn how to replace the NG tube as she pulled it out all the time. She came off O2 about 4 mths later and NG tube before that but we still had to check O2 levels periodically.

Her next heart surgery which was supposed to be her total reconstruction was scheduled for Oct. 2003 as her O2 sats were staying in the 50s-60s yes I said 50s-60s. Her lips, fingers, and toes stayed blue and we could not let her get upset because of her low O2 levels. After they got her opened up and got through her ribs they found a pus pocket under her rib cage that they said and I quote "Looked like the consistency of elmers glue" and they had never seen anything like it and it would be put in the medical books! They could not continue with surgery for fear of infection getting into her heart. We stayed at hosp. about a week to make sure no infection remained and was rescheduled for surgery in Nov. I have no proof and it really doesn't matter but I seriously think that pus pocket was a piece of gauze or sponge that was left in after one of her previous surgeries!

Oct. 31, 2003 we have a fun filled night at my cousin's house for our churches fall festival only to be woken up at 3am with a screaming little girl with 103 + temp. She had a seizure where her eyes rolled back in her head, she was convulsing, and did not seem to know where she was or who we were. We called the ambulance and was taken to hosp. and once again was airlifted to Louisville but I got to fly with her this time. I honestly can't say that was any better because I could not even get out of my seat or touch her to even maybe help calm her down! When we got to hosp. they put her on my chest to do an EKG and Echo cardiogram and she coded on my chest! That was the worst day ever. They literally shoved me in a corner and there were Dr.s and nurses everywhere in that little PICU room. They found out that her stint had clotted off and finally decided to do a heart cath try and unclog it and it worked but clotted back up a few hours later and they had to do it again. Finally she is doing well and they actually were able to do her re-constructive surgery on the scheduled day less than a week before her 2nd birthday. She spent less than a week in hosp. after that surgery and I am happy to say she is a happy and healthy soon to be 9 year old this Nov! She still has a slight murmur and some leakage around the reconstructed valve but that is normal they say. She also may have to have another heart surgery down the road if at all, as they had to use an experimental piece (at the time) about the size of a quarter because she did not have enough of her own heart for the reconstruction. She is off all heart meds and has been for years.

She has also had eye surgery, tubes put in ears twice, and tonsils removed. She had a very rough couple of years but has made leaps and bounds since then and she amazes me every day!

I am sure your experience will not be this extreme and will go smoothly as they continue to improve medically every year. I wish you the best of luck and outcome!

If you have any questions feel free to ask!

Mary - posted on 10/13/2010

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all four of my daughters,(who i adopted) have had heart surgeries. two were closed heart surgeries where they went in through their backs, they were ten days old...and are now 21 years old. my other two daughters had huge holes in the upper chamber of their heart and had to haveopen heart ASD repair surgery. on one daughter it took three patches to fix. she was 1 year old and is now 15 years old. my other daughter was a 1 1/2 pound preemie with a huge hole in her heart and also had to have open heart surgery at one year of age. she is now 13 and doing great! their surgeries scared the heck out of me, but they were up and rocking on hands and knees 2 days after surgery. i took pictures of all the steps my youngest daughter went through and made a book for the cardiologists office for them to show other parents.
i am also a special education early childhood specialist and have had a numjber of Down Syndrome children who have had open heart surgery. One had her last month at age 8 months and is doing fine. i found it really helpful for the cardiologist to show me exactly what they were going to do and what it looked like on a model of a heart they had in the office. you can do this!!!!! just make sure YOU feel really comfortable with the doctors and that you feel like you have all the information you need. Britney is a doll, and i'm sure she will do well. good luck and keep us posted!
mary
portland,OR

Britain - posted on 10/12/2010

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Hi, my name is Britain. My daughter was born with Shone's Complex. She had open heart surgery when she was 5 weeks old to close an ASD, as well as a VSD.
If you have any questions feel free to ask. And I hope all goes well for you and your babygirl!

Tania - posted on 10/10/2010

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Hi Britney, My son Byron had open heart surgery at 3 weeks of age, after he went into heart failure at 2 weeks of age. It was a very scary and emotionally draining experience, this took place over 5 yrs ago now at Westmead Childrens Hospital. The only suggestion I can say is do not feel intimidated by the staff, you are still the best judge of your daughter and if you think something isn't right question it, and ask the nurses they will tell you!! The first time you see your daughter after the operation, I won't lie will be the most shocking thing you will probably ever see and will take a long time to deal with. Make sure you process and deal with all the emotions you will go through after this time as I didn't do this trying to be the perfect mum, the perfect wife and all that was achieved from doing that was a year of depression. The emotions you will feel due to being helpless may need some professional help, so don't be afraid to ask for it.
I really feel for you as it is a very hard time, make sure you have a good support team around you and keep as positive as possible.
My prayers are with your family.

Alisha - posted on 10/08/2010

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Hey there! Like many of the mom's who have responded i have a child who has Down Syndrome. She was born with an ASD and a VSD, she was also a failure to thrive. At 3 months old she was given a g-tube to help her gain weight, 1 month later my tiny little girl had open heart surgery to repair her defects. The longest hours of my life were spent in the waiting room. it was very shocking to see her after the surgery she was connected to approx 8 machines, her incision was tidy and covered, but she had a large blood filled tube protruding from the bottom of her incision ( to drain excess fluids from her chest cavity) also her wrists were strapped down to prevent her from moving or injuring herself. she had a ventilator that was breathing for her and her eyes had a lubricant gel in them to prevent drying. it was very frightening to see her this was, but i think i fared better than other family member who had no real idea of how scary things would look. i was fortunate enough to have a friend whos son underwent a similar surgery share her photos with me. this was honestly one of the best preparations that i could have had. i wish your family the best of luck, i'm sending happy thoughts your way!

Allyson - posted on 10/05/2010

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Hi Britney, I was born with a hole in my heart and a regurgitive mitral valve. I had my first surgery at 8 yrs old to repair the hole. I went on to live a very normal life and even managed to play vigoro (sort of like womens cricket) for Qld. When I was 20 I needed a mitral valve replacement. That was also successful and once again I was doing very well until I was pregnant with my son who turned 10 yesterday, the valve seized up and I had to have it replaced again. Since then I have developed cardiomyopathy and LVF. I also have a defibrillator. I am not quite as energetic as I once was but I am still playing vigoro and tennis, (at a slower pace) but feel so very lucky that we have such amazing medical facilities to look after us all. I have seen first hand the tiny little babies having such big operations but medical science has come so far since I was 8 and I have every faith in my doctors to take care of me. I actually will be 36 yrs old on 8th Oct 2010, so I am proof of just how good the doctors in these fields really are. All the best for your little girl and your family. xxx

JULIE - posted on 08/30/2010

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My daughter also has Down Syndrome. She was born with a hole in her heart and AV Canal defect. She was 6 months old when she had her open heart surgery. That was 5 years ago Aug. 16. You just have to have faith in God and know that it will all turn out ok. Thinking of you and your family. Keep us posted.

Britney - posted on 08/28/2010

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Thank you so much, i am glad to hear your son has done so well and i will pray for your family.

Jody - posted on 08/28/2010

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my son had a PDA repair Coarct repair,hypertension and still has bicuspid aortic stenosis, his 1st surgery was at 12 days old, he will be 10 on Tuesday! there will come a time when he will need "open heart" surgery to replace his Aorta, have read up on it and, am dreading the day it happens, I feel for you, but with todays medicines your prayers can be answered, best of luck to you and your family

Jane - posted on 08/18/2010

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Can't find you on Facebook, could you send me an invite as a friend please, you can look me up its Lady Jane Willoughby

Britney - posted on 08/18/2010

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thank you, they are my world....your son is very handsome as well and looks so happy

Jane - posted on 08/18/2010

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Thank you, I will include you in my prayers. I am sure you have been told this a lot, but Katilena is gorgeous and Elian is a very handsome boy too..

Britney - posted on 08/17/2010

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thank you very much i will keep you all informed. she has now hit the 10 pound mark, this is what the doctors were hoping for just in case she has to have it soon. i will add all of you to my circle and keep you updated. i also have a page set up for her on facebook where i update everything regularly. i am so glad to hear your children are doing so well.

Jane - posted on 08/17/2010

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Hi Britney, My Name is Jane. My Son was born with Downs Syndrome, he was 6 weeks prem, he also had 3 holes in his heart, one being a large VSD, as Renee said below the doctors wait to see if the holes will close on their own. Bradley was monitored every couple of weeks and one of the small holes closed by itself. Also like Renee said Bradley stopped breathing 4 times which I had to perform CPR on him. When Bradley was 4 and half months old and 6lbs 11oz he went into Great Ormond Street for Heart Surgery on his Large VSD. The Doctors and Nurses where wonderful to Bradley and I, they explained the surgery to me, which involved putting a patch over his large VSD and a couple of stitches in the smaller hole. On the day of his Surgery I had to carry him down to theatre, My legs felt like lead, I laid him on the theatre bed and watched whilst they anethesised him. They then said I could go, but I was having a problem leaving him, the nurse guided me out of the room, and the wait started. 6 hours later they contacted me on my mobile to say Bradley had come out of surgery and it was successful, it would now be up to Bradley.
Although I had seen pictures of how Bradley would look in the Intensive care unit, nothing will prepare you seeing your child on life support and wires coming out of their chest. The nurses were wonderful and explained everything they were doing with Bradley. They also comforted me when I was crying.
We only had one problem, when it was time for Bradley to come off the life Support, when they removed it the first time Bradley would not breathe for himself, so they had to replace it, I was standing at the bottom of his bed when they did this and my legs collapsed. The Doctors where lovely, they assured me that this happens and that they would try again tomorrow, personally I couldn't see how one day would make a difference, but it did, I stood praying at the bottom of the bed listening for his first breathe, and suddenly there it was, he was breathing for himself, I burst into tears and couldn't thank them enough. From then on Bradley came on in leaps and bounds. He was out of hospital within 7 days, he had regular check ups and in Dec 2005 we got the all clear, his heart had sealed over the patch and they now class his heart as normal. Bradley is now 6 years old, and is very active , he still has other health issues but he is doing really well.
If you do not mind, keep us informed of your little lady's progress and I hope when the time comes for her surgery we can all be some support to you.

Jane

Britney - posted on 08/15/2010

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thank you michelle, im glad your daughter is doing well. i will keep your family in my prayers

Michelle - posted on 08/15/2010

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Having your baby go through open heart surgery can be a terrifying experience as I well know; our daughter had 4 holes repaired in her heart at five weeks old and that was after she had surgery at twelve hours old to connect her esophagus to her stomach because of something called a TEF (tracheoesophageal fistula). Our daughter's surgeries were done at Boston Children's Hospital and they did an amazing job at saving her life several times over. When Renee had her heart surgery she was less than five pounds and it was so scary to hand her over yet again for more surgery after all she had been through already up to that point but they took such loving good care of her that I knew I could trust these strangers with her life. She is now 18 months old and her heart is doing so well we do not have to see her cardiologist for two years. Good luck to you and your baby and I will say a prayer that her surgery goes well.

Britney - posted on 08/15/2010

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thank you all so much for your stories. i really need to hear these. i am terrified of going through this and what she is going to have to go through. she has 2 vsd's, supravalve pulmonary artery stenosis, branch artery pulmonary stenosis, and a right aortic arch. they are going to try to put a Y patch on the arteries, fix the aortic arch and the vsd's while in there in the hopes this will be her only one. she has mowat-wilson syndrome and it is quite rare, she has problems associated with it and may have more that we dont know of so i just dont know how she will do. but she is a strong girl so my faith is in her. i am so sorry to hear what your families have went through and will keep all of them in my prayers.

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