Last year I gave birth to my beautiful daughter Gabriella, Two days later we found out she had HLHS,she had her 1st surgery a week later, There were a few complications afterwards,so she went in for a Further 3 ops in a space of 2 months.but her lungs and kidneys Started to give in.she was on perinial dialasis and a ossilator for her lungs. Her little body couldn't anymore and flat lined for an hour at a time a few times. Needless to say she got brain damage,finely the DR's suggested we Turn of the machines because she was suffering and if we didn't they Would for her sake.so on the 3rd of May 09 I said goodbye to my Angel. Having said that,I could never ever go through that again My question is what are my chances of having another child with HLHS? And are there any tests I can go for? Please note that in South Africa(where I live) cannot Do heart transplants on infants and we have a 0 percent success rate for children with HLHS In SA.I am so afraid!please help!abit about me:I am 24 years old and my general health is good,I am currently a smoker and slightly over weight.
First of all, we extend condolences on the loss of your child. It is a difficult thing to go through, and it is quite understandable that you would not want to repeat that experience. If your daughter did not have abnormal chromosomes (done by genetic testing), then it is likely that the recurrence rate for a congenital heart defect in your next child would be low, rising from the normal 1% in the general population to 2% when there is a family history of heart disease. That being said, it would also have to be true that neither you, nor the baby's father, would have congenital heart disease or a chromosomal abnormality, in order for that percentage to be accurate. Information regarding the fetal heart anatomy can be obtained prenatally by doing a fetal echocardiogram. A family history such as yours would be an indication to get that done with your next pregnancy. In most high risk centers, these are done between 18 and 22 weeks gestation. If a family were to desire a termination of pregnancy if hypoplastic left heart syndrome (HLHS) was noted, then, the fetal echocardiogram would need to be performed as early as possible. Some tertiary care centers can do these with an intravaginal probe in the first trimester as early as 14 weeks, but as you might imagine, the detail of that imaging is only good for screening, and needs follow up later in the pregnancy. Best of luck.
Thank you so much for all your advice,my DR's didn't explain any of that to me.
One more question...my daughter was cremated so I only have her ashes,but I do have her umbillical cord intact,would they be able to test that for abnormal chromosomes?
DNA can be retrieved from dead cells, but generally through special labs. I do not think they can easily get chromosomal information from the residual of the umbilical cord. You could contact the doctors who took care of your daughter to see if any genetic testing had been done while in the hospital. Otherwise, moving forward, if you and your partner are thinking of having more children, it would be advisable to meet with a genetic counselor and have both of your bloods tested for common genetic abnormalities.
hi...i whole heartedly console for your baby loss.......may allah bless u...
& give patience to u.......i had also go through tis same problem....l gave birth to a beautiful son last year on nov 29/2009.Afcourse i was knowing on the 18th week of gestation....that baby is having HLHS problem.i took a chance & decided to give birth instead of doing abortion...becoz i already had four missed abortion....so i d'nt want to give up my fifth child in any circumstance.so i carried"out my pregnancy & gave birth.......then
dr told he will be not able survive.only he will be alive 1day,2day,or more.its upon god.....but its up to god....he was alive for 7mnths........with out any surgeries.....he was with me for 7mnth can u believe.yes he was....there was only 20% chances of surgery so i dont opt for it...we decide not trouble him...he live his life how much god has given......then he left me on july 3rd 2010..........becoz there was a clot in his heart....he was not able to breath & suffocating.so we took him in emergency.they do so many testings...he got siezures becoz there was no supply of oxygen to the brain.........we do ct scan brain was good... they took some water from his backbone to identify the seizures... weather their is a infection in brain but no infection..at last they concluded there is no oxygen supply in brain...it is.becoz of clot in his heart.he was also on ventilator for 2days...after on 3rd of july i said goodbye to my son.........so my story also ended here....i worte just to share with u........to know u.& tell u ur not alone in this sorrow .i was also going through all those facts.some ups & downs of life.dnt worry god is there he will bless us with a good baby....inshalla...... pray for us & all of them who having this syndrome child........
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