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Having sickle cell disease and being pregnant can make you feel a range of emotions. Below are tips, advice, and wise words from women in BabyCenter's Community who've been there, coping with sickle cell disease during pregnancy.
Body and mind
"I have sickle cell, and I'm in 'preconception' mode. I've started taking prenatal vitamins and folic acid. I see a high-risk doctor for preconception appointments as well as my hematologist every six months and a primary care provider. I'm feeling nervous, but I hope this helps."
"Morning sickness is the worst because it can bring on a pain crisis. My best advice is to stay hydrated as much as possible. It has been my biggest challenge through both of my pregnancies. But I keep reminding myself of the consequences [if I don't follow through]."
"My best tips are to get a good prenatal vitamin, take your folate every day, eat as healthy as you can, and drink lots of water. Ask questions at your [hematology and gynecology] checkups too."
"I'm juicing lots of fruits and veggies on the days I can manage to drink them. It's not easy with nausea, but I do it as much as I can. Even my hematologist has noticed an improvement in my blood work."
"Rest and keep your stress levels low. Read as much as you can about your condition, and make sure you take folic acid – it's necessary for blood building in sickle cell and for preventing birth defects."
"I have had four bad pain crises during this pregnancy, but I have been fine for a while now. Drink lots of water, rest when you can, eat the right foods, take safe pain meds if you need them, and keep your stress levels as low as possible. I wish you the best for a healthy delivery! You can do it!"
Taking doctors' advice
"It's definitely possible to have a successful pregnancy with a chronic illness. The most important thing to do is to see your hematologist regularly, even if you didn't see her often before your pregnancy. You also need a high-risk doctor because a midwife or regular doctor alone isn't equipped to deal with the issues you may face. "
"I was tired all the time and had to have several units of blood with both pregnancies, due to low blood counts. When I had pain crises, the doctors gave me narcotics in the hospital, and I took pills at home for basic pain management. Both of my children inherited the trait from me but are otherwise completely healthy. Neither had any complications after birth."
"I had pain crises several times because I didn't take my meds out of fear of harming my baby, but that [actually] put him at risk. I let my pain get bad enough to be admitted [to the hospital] with dehydration and a high heart rate. The docs told me the stress I put on my body also put stress on my baby. The pain medicine helped me much more than it hurt either of us (though it did make my baby a little sleepy)."
"I take oxycodone (a narcotic) when I have a pain crisis, but I haven't had to take it very often so far during my pregnancy. Thankfully, all is well with me and I'm 17 weeks along. I had a vaginal birth in my previous pregnancy and considering I had to be induced, everything went far better than the scenario I had imagined."
"I have sickle cell and I had a vaginal birth. Labor pain was manageable, and it helped to be able to move around my room or go for a walk. Nothing like a sickle cell crisis at all!"
"I have SCD, and I'm 23 years old and 6 weeks pregnant. My younger brother has sickle cell too. We had pain episodes once in a while, had to monitor our health more closely than other kids, and knew we'd never be star athletes but that wasn't [so bad]. With good medical care we've had fulfilling lives."
"My older sister was born with sickle cell anemia. I was born without the disease but with the trait. Let me tell you this: My sister is 35 and living a wonderful life. Occasionally, she doesn't feel good, but I swear if she didn't say she had this disease, no one would know. She's pretty healthy and always happy, successful in her career, and has two children who don't have the disease. People with this disease can and do live full and fairly normal lives!"
Bonding over babies
"Despite my partner and I both being carriers and knowing the risks we face with our future pregnancies, we're sticking together and won't let [our worries] come between us. If anything, this whole experience has bonded us tighter than before, and has brought us much closer."
Visit the Society for Maternal-Fetal Medicine's website for more information and to find an MFM specialist near you.