Sarah was born at week 38 via scheduled Csect. Daddy Sylvester wasn’t able to witness her birth because he had HFMD from Jovan (our elder son) just days before the operation. She had stridor (noisy breathing) at birth and was only in contact with me for a brief moment before being whisked off to the ICU. ENT doctor came, did xray and gave “green light”. But the happiness didn’t last long. PD said that next day morning that Sarah still wasn’t well as she wasn’t tolerating milk feeds at all. And so she was transferred to KKH CICU that very evening.
It broke our hearts to see her on tubes. But it wasn’t of a choice. The doctors there said she had a left side nerve palsy on her face. She wasn’t swallowing and couldn’t manage her secretions well and was having desaturation (oxygen level dropping). She later had many episodes of such and eventually we had to make a decision whether to let her have the tracheotomy (a hole in the neck) to secure her air way and to prevent her from having sudden drop in oxygen. She turned blue a few times and the last time was when I saw her oxygen dipped to only 8%! We then agreed for the surgery to be done.
All other tests came back normal. She has some information loss in the intron of the WWOX gene (16q 23.1). However as of today’s science and knowledge the genetics doctor do not think it contributes to the following symptoms she has. She has stiff muscles (high muscle tone) so we have to constantly do physiotherapy on her. She still can’t swallow so we have to help her stimulate but it will take a long while before anything else can be done. She has a high arch palate so bottle feeding is hard and not possible. And now we know she failed her hearing tests. Neurologist said that her brain stem cells are not functioning well. And she got GERD too.
I didn’t get to carry her till one month later after her birth.
Now she has grown a bit bigger (still not catching up with her peers!) But I’m still praying and hoping that she will out grow all these soon! Getting a lot more fiesty! Pulled out her feeding tube a few times already! Can someone say, “OMG!?” Haa…
She requires constant suctioning in the mouth, nose and trachy site. She is on continuous feeding (feeding via a pump through the tube.) Please pray for her and that she can recover to the fullest as possible as she can. Thank you all. And I pray good health for all too!