Sikcell: People living with Sickle Cell

We still Hope

HOW TO HANDLE

I recently delivered twins and if it wasnt bad enuff to leave one in the
hospital i just found out the other has SCD. ive been reading info on the internet
and very happy i came across this site.

i know im not the only mother that have went through this , my questions is how do i get
over this sad and depressed feeling. i feel like its my fault

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Permalink Reply by lilian mbori on July 23, 2012 at 3:05pm

hi tamekia, i feel you coz my daughter has scd. when the diagnosis was made 6yrs ago i went thru the same i was inconsolable. but with time i drew strength in my christian faith and seeing how determined my gal was.with time i was no longer afraid of the future but optimistic. times ahead will be uphill task but i promise you that youll overcome it for baby. read about scd in detail and be ur babies advocate. the more you know the more things become better. i will pray for you, be blessed.

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Permalink Reply by Tamekia Cardell on July 23, 2012 at 3:21pm

Thank u for your encouraging words lilan . I am getting better day by day. With Faith in god i know things will get better:)

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Permalink Reply by Tabo mubemba on July 25, 2012 at 3:15am

Hi Tamekia,

What you are feeling right now is normal as i also went through the same.My Daughter is 4 years +and very strong.The greatest thing is to know what you are dealing with and understanding it,Like lilian has said .For me my faith in God has also helped me be where i am without fear of the future.I believe God will not give me what i cant handle.When the diagnosis was done 2 years ago i was shattered at first but it didnt take me long to go on my kneels and talk to God.I told him for what you have allowed to come my way,please give me the tools to handle it.I used to cry in the office and now my friends tell me how shocking it is for them to see me this strong.Dont feel guilty about anything as life could be worse.There are other people who are going through worse cases than what we have and so we must be thankful to God and just ask him to give us the power ,knowledge and strenth.It is not easy but with positivity we can make it.i will be praying for you too.Be blessed and just love your Babies!

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Permalink Reply by Tamekia Cardell on July 25, 2012 at 5:49am

This site has Been a tremendous help to me. I am able to talk to ppl that understand that's not something i can do with my own husband. i have given it up to God for i understand now its a diganosis not a death sentence . Your right it could be worse.... I know a challenge may come our way, but i do believe God will only give us wat we can handle :)

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Permalink Reply by Nina on August 21, 2012 at 6:13pm

Oh honey,

I know what you mean by not being able to talk with your husband about it. I believe for man it is even harder to accept things. It was the same with me. And worse, my husband is a researcher and he has his phd in pathophysiology. At first he was in extremely denial. We couldn't even talk about it because he would it was all lies... Sometime later he accepted but still not wanting to talk about it. I was so surprise when our son was to turn 2 and our baby girl was 4 months old and he mentioned to some guests at our house that our kids where SS. I know your pain. Be positive and for sure God knows your strength.

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Permalink Reply by P.Allen Jones on August 10, 2012 at 5:16pm

Hi Tamekia,

When I was born with sickle cell disease my parent knew nothing about it. That was my biggest problem...their lack of knowledge. Get as much information as you can about sickle cell, talk (make doctor's talk) about this with your childs doctors, join a support group of other parents of children with SCD...it helps to cry with someone who understands.

Life with sickle cell can be lived fully and happily. Embrace your children, embrance their bodies (sick or not) and fight this fight FOR them. There is soooo much help out there and you are NOT alone.

God bless you on this important journey....I wish someone told my mother this 52 years ago when I was born!

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Permalink Reply by Tamekia Cardell on August 12, 2012 at 3:32am

P. ALLEN JONES THANK YOU SOO MUCH FOR RESPONDING. THERES NOT A DAY THAT GOES BY THAT I DONT THINK ABOUT WHATMY BABY WILL FACE IN THE FUTURE.
I AM TRYING TO LEARN AS MUCH AS POSSIBLE N REMAIN POSITIVE :)

I KNOW THE RODE AHEAD MAY NOT BE EASY BUT IM PUTTING MY FAITH IN GOD....

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Permalink Reply by Nina on August 21, 2012 at 6:06pm

Hi Tamekia,

Congrats on your babies!!!! Believe me you are a blessed one!!!!!

I'm a mother of 2, and both my kids have SCD. Whne I first came across it, I had just delivered my son, it was my first baby... I eas miles away from my parents and all I had was my hubby... I agree with you, the first of all the feelings: GUILTY!!!! Yes, it was horrible, then we went for the first hematologist appointment and it was a nightmare... We went through it all... And we hold on together. Trust me, if you make the right choices and teachs your baby to live a health life, for example, start to give her water right now, the doctors will tell you that it is not necessary, but it is essential. Hydration is the key. And don't let the sadness and the depression take you, she is just a baby like all the others!!!! Enjoy her and never treat her different. My Son now is 4 years old. He never had any complication related to SCD. You can see a video of him on youtube, http://www.youtube.com/watch?v=DeNEr1kK6Es, here is the link. He is a very active little one. He also plays violin, does math, reading and karate. My daughter, who is 2 1/2 years old also is doing great. She had acute splenic sequestration when she was 7/8months old, at that time as she was still exclusively on breastmilk we thought we didn't started her on the program we had settled for her brother, but it was all, since then we put her in the same diet and never more.

Try to read and get to know a bit about SCD. And feel free to contact me if you need to talk. Here is my email: lininhaanjo@gmail.com.

And never think yo are alone, because you aren't.

Take care!!!!!!!!

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Permalink Reply by Tamekia Cardell on August 22, 2012 at 5:47pm

Thank you so much. i will be emailing you trust me. if you dont mind me asking what kind of diet are they on? i havent given her water yet but will right away.

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Permalink Reply by Janet O. on January 23, 2013 at 1:29pm

Tamekia,

I am new on this site and although this discussion is several months old I can't help but reply. I had twins recently (December 2012) and one of them has SCD (SS) and the other has the trait. The more I read about the disease the harder it is to not get depressed and emotional over my baby boy's future. One way I cope is to think about how it could've been worse and thankfully his disease is manageable with proper care and caution, not terminal (like some types of cancer god forbid).

I get so angry with the practice that was supervising my pregnancies because I was never told I carried the trait (they discovered it with my first pregnancy back in 2008 but I didn't find out until I was almost 10 wks pregnant with my twins in 2012).

At this point I've come to terms with my son's condition and already started taking him to a pediatric hematologist to monitor him for complications. My worst fear right now is having my son experience any of the symptoms that can come with SCD and me not understanding it in time to provide him with proper care. It can be overwhelming!

Well if you ever want to chat, hit me up! I don't have much experience with this but since your twins aren't much older than mine maybe we can keep in touch and provide support for each other whenever we encounter some bumps in the road with this journey.

Be well!

- Janet