Sikcell: People living with Sickle Cell
We still Hope
Mom to a newborn with Sickle Cell
Replies to This Discussion
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Permalink Reply by Imani Pittman on
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This is hard news to find out however your child is going to look to you for strength and you have to look to God to give you the strength grace and favor you will need to take care of your baby. Please remember as your baby gets older they will imitate how you react and cope. I am not saying g it's going to be easy but God WILLIAM give you the tools you need. God Bless!
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Permalink Reply by Elle N. Em on
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As a mom with a daughter I can empathize. My daughter is now seven and has had only 1 crisis in her life. I pray that you have a strong support system. Make sure your daughter gets lots of fluids, eats healthy foods with lots of folic acid, and consider a vegetarian diet once she starts eating. I also recommend that you read Hope and Destiny: The Patient and Parent's Guide to Sickle Cell Disease and Sickle Cell Trait. Read and learn all you can! Sickle cell is not a death sentence, find your daughter a compassionate hematologist and pediatrician that you can trust.
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Permalink Reply by P.Allen Jones on
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Sweet mom,
Your child needs you to be ok. She needs you to put your fears away and put on your fight. Fighting for her healthy life, fighting for her rights for good healthcare!!!
This is an honorable fight and God will give you AND her strength.
God bless you ❣
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Permalink Reply by AnnetteK on
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She will need you. Just remember that if you are positive, she will be too. If you are hopeless and fearful then she will too. Love her, guide her, pray for her.
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Ariane,
God bless you and your baby ..YOU WILL BOTH BE FINE. God is on the throne. Sickle Cell disease is NOT a death sentence. It is a mere setback, for a comeback! GOD is watching us to see how we cope with the ills of the world, so be steadfast and true to your faith. My 7 yr old was diagnosed in my womb.. amniocentesis. I never heard of this disease until I found out he had it. I was devastated, blamed God, and went through it.. But guess what, my son is healthy and just fine. Every so often he gets a cold and it develops into pneumonia.. or a flu and he is hospitalized with antibiotics for 2 days.. but generally NO pain crisis. Plenty of water all day.. eat fruits and veggies as much as possible.. Vitamins!! and just hugs and kisses.. Your child needs you to be the heavy..so take the news to be vigilant and courageous.. Hydroxyurea is the new drug for children and my son has been on it almost a year. His sick visits have been cut in half. Never forget there is always HOPE!! If you need to talk you can hit me rocnewell@yahoo.com
Raquel
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Permalink Reply by Youmna Erstad on
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Ariane,
Sickle cell is just a disease. Serious but manageable. I have lived with sickle cell disease for 53 years. Yes, they told my mom that I wouldn't survive past 5 years old. She refused to accept it and provided me with the best possible care. Your child should avoid extreme cold, extreme heat and extreme fatigue/tiredness, drink enough liquids, have a nutritious diet, take his/her prescribed medicines consistently and have regular check-ups. And above all, get a lot of love! What is often forgotten is that stress should be avoided too, so your crying will not help. Be strong for your baby because he/she will live very long!
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Permalink Reply by seulear hope on
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You have to be strong for your baby, I have a seven year old and she takes care of me and encourages to be strong when I have a painful crisis, she cheers me up, shows me love and care because I do the same for her . So you need to do the same for her. BE STRONG!
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I know how you are feeling as I am the mother of a 6 year old girl who has SS. A few things i would like to tell you, Firstly you and your baby will be fine, i know it's shocking when you first get the diagnosis but with time you will feel more OK with it. Secondly, education about the condition is key - you need to understand what SS is, what triggers a crisis etc. you know what they say "knowledge is power". for my daughter i came to learn what triggers her crisis and for her it is cold and dehydration. I make sure she is always kept warm (not hot since that could also trigger a crisis) and drinks lots of water. I started making her drink water from 6 months so she got used to it, now she willingly drinks over a litre of water daily because it is like second nature to her. She hasn't had a crisis in nearly 3 years now. Lastly, there is lots of research and new drug development going on which provides hope of treatment for our children, so we need to be POSITIVE.
You will be in my prayers. take care of your baby.
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Permalink Reply by Ariane Williams on
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Thank you everyone for your support and encouragement. I still am afraid of what the future holds, but I am coming to grips with it a little more and doing all that I can to educate myself.
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The sure way to do it, is through prayers and diet.
Foods Rich in Thiocyanate are anti-Sickling nutrients....they are the source of organic iron and cleansing natural chlorophyll.
Here are some of the foods:
Yam, Plantain, Cassava, Almonds, Cashew nuts, Macadamia Nuts, Peanuts, Strawberries, Banana, Peaches, Cabbage, Turnips, Chickpeas, Sorghum, Millet, Lentils, Lima Beans, Butter beans, Black eyed peas, Raspberries, Mustard, Horseradish, Garbanzo beans, Carrots, Buckwheat and Green leafy vegetables.
In addition, Garlic is a natural antibiotic (sure works wonders)
Credit to Cheen.
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Thank you for sharing with me :-)! I've been making all of her baby food homemade, so I will give these options a try. I know she is too young for the nuts and strawberries but when she is able to I will use these in her diet.
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