I know what u’re going thru.I was 14weeks pregnant when I had a prenatal test.The result showed that my baby is SS.I was devastated. I cried and cried and cried..We decided to keep the pregnancy, but the rest of the pregnancy was full of worries, depression and anxiety.
I finally had the baby and waiting for the newborn screening result was hell.It finally came and it was confirmed that my pretty girl has the disease.I entered into another round of depression, crying and anxiety.I was anticipating crises day after day.I used to wake up at night to examine her hands and her feet to see if she has hand and foot syndrome as I was told that this may be the first symptom.
Its not as though I worry less now but I have decided to take the bull by the horn. I am studying stem cell transplant as I’m hoping she’ll one day have it.I also try to keep the rules of not exposing her to weather extremes, keeping her hydrated(this is always a struggle as she hates drinking water),and generally observing a high level of hygiene.
Above all,I make sure she eats healthy. Like Shukura said, diet can and will make a difference.I exclusively breastfed her till she was 5mnths 2weeks,then I introduced solids and water.I had to purchase a food processor so I can make her food rather than rely on commercial baby food which has less nutrient as a result of processing. I steam and puree fruits and veggies like carrots, green beans, peas, apples, bananas, sweet potatoes, beetroot (I had to stop giving her this cos of its nitrate content. i’ld probably start drinking it myself so I can pass it onto her via breast milk).
I make her cereal with home-made carrot juice rather than plain water.I restrict her cereal intake to twice a day and give her more of the home made food and breast milk. I still express breast milk so she can have it when I’m not around. My baby will be 7mnths in 2wks and has not had a crises nor shown any symptom. She grew her first set of teeth without a fever. Wait a minute….I’m not sure why she hasn’t been sick yet. It may just be sheer luck,or God’s favour, or it might even be that its not yet time for her to start falling ill(maybe its still lurking around the corner.I heard that SS babies here in Nigeria don’t fall ill until after 6 months).Whatever it is, I’m doing what I know to do and believing that God is doing the rest.
I think you should get yourself together, gather as much knowledge as you can and put the knowledge into practice. God is able!