Most people are excited to bring a bundle of joy into the world. As a mom, you love them from the moment you feel that first burst of life moving in your belly. But what happens when the doctors tell you that your baby may or may not have Sickle Cell disease (SC)? What happens when those words are no longer a “maybe” but are a fact of the new life you just introduced to the world? Breathe. That is the first thing you need to do “breathe”, talk to your doctor, research, learn your child’s body and prepare your mind.
I happened to find out before the birth of my baby that it was a good chance she would have SC. I cried at home for days before I even went to discuss it with my prenatal doctor. My husband had donated a kidney, got his blood screened and found out he carried the gene for SC. Never being educated on who not to mate with but knowing fully what that biology means for out child; I began to cry. But this was just the beginning when I dried my eyes.
From the moment you find out your child could be diagnosed with SC begin to research. Join every support group online. Start your own if your don’t like the culture of those. Read the blog and take notes on what parents are saying that work and don’t work. Take nothing as law until you must and learn the key terms relevant to SC. Some terms you should are the different names of SC, the medical definition of SC, pain episodes are called crisis and the pediatric doctors for SC are called Pediatric Hematologists. Know everyone’s experience is their own. Your child’s body will be different from mines. What her child can’t tolerate yours may be able to. Take all those first time questions to your hematologist and don’t be afraid to ask them all. Don’t be afraid to ask for him to explain further things you found that you do not understand. But the most important advice for a new SC mom is to trust your gut. I believe your gut is your God given sense that activates whenever we are faced with decisions.
Begin to learn your child’s body and how the SC affects it now and in the future. Most infants have a high level of fetal hemoglobin and will not experience a SC crisis until they are 1 years old. This can very per child. The frequency of the crisis’ will vary per person as well. Your child will be put on penicillin until they are 5 years old. This helps with preventing major infections like pneumonia. During your research or in discussions with medical staff you will learn what triggers a SC crisis like cold weather, extreme hot weather, or stress. If you think of how you bundle up a baby during the infant stages; continue to keep that same mindset for as they grow older to aide in crisis prevention. Keep a pain journal to track the crisis and the things that work or don’t work for your child.
Prepare yourself mentally to keep it together for the sake of your child. Those first few crisis you will break down. This is completely normal. The feeling of not being able to do anything will come but do not let it stay. Be prepared in your mind to counter those feelings by either encouraging yourself or calling someone who can do it for you. Do not beat yourself up or give into depression. You have to have an outlet for your pain like meditating, prayer or keeping a journal helps as well.
There will be no greater person than you and their father. Share the information with dad and help him to be the advocate too. You want to be able to share the load so that when one person needs to breathe, the child is always covered. You both are the child’s advocates now and their first line of defense.