DORV with DEXTROCARDIA

Lori - posted on 03/03/2009 ( 4 moms have responded )

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Hi, My name is Lori and I have two little boys. My oldest son Carter was born with Congenital Heart Disease. He has a very complex heart defect. He was born with DOUBLE OUTLET RIGHT VENTRICLE WITH PULMONARY STINOSIS, TRANSPOSTION OF THE GREAT VESSELS, AND DEXTROCARDIA. HE ALSO HAS SITUS INVERSUS TOTALIS. So basically all his organs that are suppose to be on the right side of his body are on the left and visa versa. He is two now ( turned two in January) and has had one surgery when he was 6 months old. Spent 6 weeks in the hospital afterwards. It was an emergency surgery. He went in for a routine heart cath and ended up coding! Scariest day of my entire life. He started crying and his O2 levels dropped to 14!! They ended up doing the surgery that night. He later had problems with fluid on his chest so they had to put a tube in his chest to drain it. They finally found a medicine that helped dry it up. He also got an infection which delayed him coming home. He finally come home six weeks later. He is doing great now. It took him a while to bounce back. After spending six weeks in a hospital bed he couldn't even hold his own head up any more. It was like staring all over. He didn't start walking till he was about 21 months old. His cardiologist said that he may not walk till after his second surgery. It still doesn't make it any easier to see you son struggle to do things that come easy for others. It is so hard to get past the stares and comments people make about him being behind. He next surgery will be this summer. I am scared to death but yet anxious to get it over with. They say he shouldn't need any more after this one, so that is a relief.

Getting pregnant with my second son was scary as well. The chance of having a second child with a heart defect after you have already had one is a little higher. So until I had my ultra sound at 20 weeks I lived in fear that my second son, Curtis would have the same problems. By the Grace of God he was born with a normal heart....with the exception of a small VSD between the third and fourth chamber. They said that there is really nothing they needed to do but to wait and see if it closes up. Both the boys go in to see their Cardiologist in April and we will find out if Curtis' hole in his heart has healed and when they think Carter's surgery will be.

They still don't know what caused Carter's heart condition. I did everything right. I played by the book. It is so hard to except when you do everything right and everything still goes so very wrong.

My son Carter is the happiest little boy I have ever meet. He has a zest for life that I only wish I could have. I wouldn't change him for the world....even though, like most parents, I wish I could take his place.

Anyone else have the same experience? Has anyone else have a child with this? Would love to hear from you all!!

God Bless!
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Anita - posted on 06/10/2009

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Hi, my son Jay was born in October 08 with the same condition as your son. We know this condition as heterotaxy syndrome. I have 3 daughters, who thank God were born healthy. My son was discharged from maternity as a healthy baby, nobody noticed anything. He was at home with us for 5 weeks, and it wasn't untill he got a rash and we took him in to casualty that we found out how sick our little boy really was. His o2 sats were 40%, nobody could believe it they even changed the monitor, thought it wasn't working. A chest x ray then showed my son's heart was on the right side. We were transferred to a fantastic childrens hospital, Crumlin in Dublin where further tests showed his stomach was also on the right his liver is midline and he had no spleen. The echo of his heart showed he also had TAPVD which made him very complicated, this meant the veins going in to his heart were in the wrong place. He also has severe pulmonary stenosis, right atrial isomerism, bilateral SVC, complete AVSD mild, hypoplastic LV and confluent pulmonary arteries. He had a TAPVD repair and a BT shunt the next day. Don't think anyone expected him to survive, he was on ecmo for the whole weekend which is basically a bypass machine. But thank God against all the odds he survived. He came home a month later and he is doing so well. We couldn't ask for better I am so proud of my little man. He is nearly 8 months old now, and he is back for his second surgery nexy Monday 15th June ( the Glenn), We are praying hard everything will go well.Apparently this condition is extremely rare we're finding Doctors and nurses in our local hospital have never heard of it.A gene has been found in mice and we were told that it is seen more in boys than girls and if I was pregnant again we would have to be monitored for it.But I wouldn't swap my little man for anything, just wish he didn't have to go through so much, it breaks my heart. He is the happiest baby you could ever wish for just goes to show. He was also at home for 5 weeks with a broken collar bone this happened when he was delivered but no one picked that up either and God love him he had no energy to cry! Great to read your story we're not alone. Please keep in touch wish ye and your little men all the very best.

Colleen - posted on 03/11/2009

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Wow! I am praying for you and your family! When I was pregnant with my youngest, we were told that he wouldn't make it. He too is dextrocardia, his heart is centered in his chest and flipped over. He went to Boston Childrens the day I delivered and we were told he needed surgery...he had NO blood flow from the chest down! We thought we had lost him! Scariest Day of our lives....He is 4 now and has yearly Cardiology appointments in boston and regular ones here in CT.

I would love to hear how everything turns out in April!

Leighann - posted on 03/06/2009

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Hi Lori, My daughter is 12 now and she has DORV, Pulmonary Stinosis,Large ASD, Mitral atresia, her opps to date are 6 open heart,1 closed heart 10 heart caths,last year we where flown to Melbourne where she had open heart to stop her heart from fluttering and to get a pacemaker put in,she is doing really good now but will need to in the future have a heart transplant.even though that sounds a lot there are people out there with heart kids that they can do nothing to help,we are very lucky to have wonderful dedicated doctors and nurses who spend there lives finding ways to help our kids,Felicity also has hearing loss from the antibiotics she had to be on,and has learning problems,she also got post traumatic stress last year after her stay in hospital,all the past came back to her and she could not cope with it all.But like your son Felicity is the happiest girl and the smallest things make her happy.

Be Happy,

Leighann

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