Comment

Comment by DrD on April 24, 2009 at 2:54am

Shukura's word are mighty. Read them over and over again.

In particularly endorse the part about educating yourself about sickle cell disease so that you can be an advocate for your daughter and in so doing teach her by example to be an advocate for her self and others with sickle cell disease.
Life expectancy for any one born with sickle cell disease today can be as good as any other.......well in excess of 56 years. This may not be what you want to hear, but you have to know the facts so you can know what to expect and not spend time feeling sorry for yourself or your daughter, rather spend time enjoying every day with her whenever and wherever you can.
Year 0-5y: Antibiotic prophylaxis and immunization are crucial. Know the score about this.

There is a cure.

It does not come easy. Bone marrow or cord blood transplant can cure SCD. The cord blood from another child (your daughter's brother or sister) could be used to cure your daughter. Speak to your doctor and do your research. I am not trying to give false hope; these cures have been documented, just not readily available. If you plan on having more children and you and your husband have the trait, consider pre-implantation diagnosis, so that you can have an AA child. The cord blood from this could potentially be use to cure your daughter.
The only drug approved in the US (and other countries) is hydroxurea. It works, but has its own draw backs. Make sure she has regular transcranial dopplers (TCD-ask your doctor) to screen for strokes. Regular blood transfusions have been shown to reduce strokes in sickle cell disease.
Nicosan has been mentioned. It is not approved in the US and not available in the US. I am aware that (see sickle cell can kiss my a**) Vixen has been able to source this for others, but with the drug now reverting to the original owners, most of us are not sure if supplies will continue. (Y'll have my prayers).

Now here is where I draw the distinction from other commentators. EVERY black person in the WORLD even before they are old enough to have babies should and MUST know about sickle cell disease. DID you not know you and your partner has the trait and/or sickle cell disease? For your daughters sake........make it your mission to educate 10 young females about SCD in your local community. It will help you know what to tell your daughter when the time comes for her to have her own children, if she chooses to.
I hope this last line is encouraging. Nowadays, people with sickle cell disease live a long and productive lives. Therefore there is no reason why your daughter should not. However, every sickle cell person is somewhat different. Some have a crisis infrequently; others are always in and out of emergency rooms. EDUCATE yourself on every aspect. Ask questions of your healthcare provider and get to know SCD as much or better that they do.
We are here for you and you for us.

Comment by Neise on April 15, 2009 at 1:08pm

Hi Shay. I am 36 years old and I have sickle cell disease. My parents did not find out I had the disease until I was 4years old. The good thing is that you have a head start. You know early on about your daughters condition and you can begin to educate yourself on different remedies that will aid her. The most important thing you can do for your daughter is to love her and to always let her know that you are there for her. My mother also sat by my bedside many nights. She would rub my legs (which still helps even today) and hold me close to her. I never saw her cry but I knew each time I had a crisis she was fearful. She was very protective of me. I couldn't play much with my friends outside, couldn't ride my bike or go swimming. Being a child I didn't quite understand why I couldn't do what my friends were doing but as I got older I understood and appreciated my mother being so protective of me.

At times, your daughter will experience really bad pain and it will scare you. Remember to keep God in your life always because He can ease your mind. One of the most important things my mom did for me was keep my in church. She and I both learned to lean and depend on God. Keep your baby lifted up in prayer. I am a living witness that prayer helps. Also, make sure your daughter had a compassionate physician. This is very important to your daughters treatment. There are a lot of doctors who are very sickle cell ignorant and have no idea how to properly treat the disease. This is a crucial element in the welfare of your baby.

I don't blame my parents for my illness. I know that it is not there fault so you can't blame yourself. I am a firm believer that God allows everything to happen for a reason. We may not always fully understand it but we have to accept it. Through my illness I have been able to encourage others. People gain strength through seeing the miracles that God performs in my life everyday I am on this earth!

It is a long road but keep God as your foundation. I will keep you and your baby lifted up in prayer as I do all of my Sickle Cell family. May God Bless and Keep You and just know that you are not alone!

Comment by iysha on April 14, 2009 at 10:27am

Hello Shay, I am the proud mother of a 15 month old baby girl who was diagnosed with sickle cell disease at birth. I completely understand all your feelings and to add to them, I also felt guilty for bringing her into the world to have to deal with this disease. It took me a full year of her life to come to terms with the fact that she has sickle cell and that it was not my fault. But I am now at a place of acceptance where I know she may have terrible days, but I know we will also have wonderful days that I can only thank God for.

We are resident in Trinidad and Tobago, but my daughter was born in New York. I lived in New Jersey for about 7 years before returning to Trinidad to work. How old is your daughter now?

I was very worried after my daughter's diagnosis because like you I did not know what to expect, when to expect it and I spent a year not enjoying my baby but constantly worrying and waiting and looking for any sign that she may have been in discomfort or pain. It was a wasted year because she had absolutely no sickle cell issue for 14 months. Time I could have spent soaking in every intimate detail of her life.

I urge you to not be like me. I know you have to go through the emotional change journey but try your best to get to acceptance and learn to live your life as normal as possibl;e without worrying and wondering about what may happen.

I do admit there are times I fall back to the sorry for myself state and blame myself and worry but thank God it is a lot less now.

My daughter had her first visible physical manifestation of sickle cell two days before she turned 14 months and that was in the form of dactylitis of her left hand fingers. I was terribly unhappy when I first realized but she dealt with it like a trooper and I had to take her strength and use it to show her how much I am there for her and show a brave face. She was in obvious discomfort but still was her usual jolly lively and happy self. I thanked God that she was able to deal with it this way and I pray that this is a manifestation of what this disease will mean for my family.

Keep the faith and feel free to call on me whenever you need to talk.