What management Tips, Advice and Strategy would you suggest to Couples for whom there is a real possibility of bearing children with Sickle Cell Anaemia?

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Children with sickle cell disease-SS are at a higher risk of having a stroke (brain attack) or other forms of brain damage. Strokes that result in some permanent long term brain damage occurs in 11% of children with SCD-SS. An even more common form of brain damage called "Silent Infarcts" occurs in 22% of SCD-SS children aged between 6-19 years. These silent infarcts are very important because are associated with poor neurocognition in school-aged children. There is evidence that the brain injury begins early in life. One observational study of 23 infants and toddlers with SCD-SS at an average age of about 14 months showed that 3 (13%) had already developed silent infarcts. In another study, four (11%) of 36 children aged less that 4 years had abnormal brain images (MRI and Transcranial Doppler) indicative of silent infarct. The authors conducted a study to determine how common silent infarcts are in SCD-SS children under 6 years old. Read more....
You need to love your child but also allow them to be there own person. Raising a child with sickle cell is very very hard but it is possible, Just keep up on dr visits and blood work, YOu must be your childs advocate. If you done agree with something you let the dr know. Do as much research as you can so you know what to look for. Good Luck!!!!
If two people KNOW they have SCD disease, and haven't had kids yet, they should consider adoption. I only say this because they could spare the child and themselves the pain of this disease. If they have BOTH have the SC Trait, there is chance of passing the disease on to their children too.

I love children (I have two) and I love couples thinking about children. But, I have one with SCD and one with Trait. My babygirl suffers just like I do...and its sad to see. If I knew that my husband had the trait (I have disease) then I would have tied (you know what) and adopted. The suffering is not fair to the children.
I think that this condition is so painful sometimes that you must do everything in your power to prevent another kid experiencing such pain. I would really suggeet addoption. I know people want to have their biological child but if this is the cost its better to adopt and love them all the same
My husband and I had child 1 (born with nothing) child 2 was born with SC + Alpha Thal...WOW!! we have managed well, she is very healthy and has had no complications, besides crisis about 4x a year. We look for things that will help her health in vitamins and we keep to a very very healthy eating lifestyle. We live in a southern state, so the weather is always warm and friendly...it stresses us when she is in crisis but she knows we love her and are here for her. We are also teaching her to manage some things on her own...when she feels like crisis is coming. We are also homeschoolers, this limits the amount of contact she has with the usual circulating sickness in schools. I am proud to say after 5 years we are doing great!!!
Hi i have 2 children a girl, 13 years with SCD and a boy, 2 years old who is SC free he doesnt even have the trait Thank God. Me and my husband didn't know we have the SC trait till i was 8 months pregnant. I was terrified about having an other child eventhou i wanted it so bad, i couldn't imagine bringing a other child in this world to suffer. In the beginning it was very hard to deal with cause we didn't know much about SCD, it was so painful watching my daughter go thru the paincrisis. After alot of research and 12 years later we decided to try again. We tested the embryo when i was 2 months pregnant, and he was sickle cell free. So it can be risky to make more children when both parents have the trait but there are ways o find out if the baby is healthy or not.
It might sound crazy but I have a 20 month old with Sickle Cell SS and am currently expecting another child now that I dont know the outcomeof yet.Me and my husband are very supportive parents and I know that my child will have the best life ever.Someone may ask if I feel guilty about having another child with one of my children having this disease and I say no.I also am going to enroll in a cord blood program that can save my daughters and also my new babies life so hopefully this is hope for my family.Us as parents need to keep ourselves educated with this disease and we need to believe that we can defeat this if we all stick together.Sickle Cell is not a death wish and everyday I am learning that you can manage this disease and also dont believe everything the doctors tell u because they are not always right they are human just like us! If you eat right and take the right vitamins u can remain crisis free or at least they will be less severe.God said that everything u need he has provided for us and if u believe in him he will make a way!
how are things with child #2?
hi guys!!!

am a mother of 2 daughters, the youngest suffers from sickle cell she suffered stroke last year and it has been so hard for me.i got some information on the net on PGD. A test that can be done on the emb ryos to rule out SCD then only embryos that test negative are implanted using IVF it's 100 % but very expensive it is the same procedure used for sex selection before implantation.as i write this email am in hospital with my baby who is admitted, she has a fever that isnt responding to antibiotics and it is quite stressful.please pray for my baby Lisa.
Have the child and give them all the love and attention and affection you would a healthier child. My baby girl will be 1 year old on Jan 08,2010. She has had one minor infection which caused her to be hospitalized for a couple of days. Other than that she is developing and growing and running around like any other child her age.
If possible keep the child out of childcare centers until around the age of 3. Their immune systems are already so weak and young children get sick faster than centers can sterilize. Your job as their parent is to keep them in the safest and healthiest conditions you can. I do miss working and staying home with my daughter can be more work than it is cut out for. I feel in my heart for now i am doing what is right because the last thing i want is for a sickness to creep up on her while she is asleep.
I am not going to lie my husband and i cry weekly because we are so unsure of what the future brings, we feel robbed not being able to have the tools to protect our child and keep her not only safe but comfortable in her own skin. But we keep faith, faith in ourselves, faith in the Lord, faith in medical knowledge and faith that the medical knowledge will continue to grow.
Would i have another child? I cant not honestly answer that. Part of me just wants to spoil the one i have and part of me wants to adopt a child a little older and hopefully with Sickle Cell.

We can not let this disease beat us or win. Live your life and work with what you have.

Yes our instinct is to protect them and keep them home. My daughter went to the nursery because i had to go back to work. She is now five years old. Very active and healthy, she has the ususal illness of any other disease free children. i donot treat her special, or treat her as if she is sick or be overprotective. She attends regular school but she is taught to wash her hands properly not to eat uncooked meals and also wherever she goes they are appraise of her SCD. She knows why her eyes are jaundiced (yellow) so that when the children ask she can explain. she just brushes them off and say ' I have Sickle cell that is why my eyes are like that". She participates in very activity.  What i am saying is that you have to allow to them the freedom to grow and develop and have faith in God. Do the best you can, continue to research and set proper healthy diets. And yes the more they interact with the environment the better their immune system is developed. So let them roam and be free.

Hello am a mother of a 13 year old girl with SCD, my daughter, just like your went daycare and to a regular school and now she is going to high school. she also participates in all activities.

I think thats we as parents of kids with SCD have to treat our children normal, its very important for their self esteem. We got to be causes ofcourse.

I was happy to hear that your daughter explain(when ask) to her schoolmates taht she has SDC. My daughter is going thru a fase, that she rather not mention it to her schoolmates, i dont know if its because she is becoming a teenanger. I have to see how i will deal with this now..

Good luck with your daughter.


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