#SCIDfamily

[herriblog]

SCID

Severe Compromised Immunodeficiency Disease (SCID). It is an immune disorder that is absent in an individual. This is usually detected in a newborn screening done in Singapore when they are about 48 hours old. These newborns have to stay in isolation, preferably a positive pressure room in a hospital till they get a bone marrow transplant (BMT) or what they call it medically HSCT. After the transplant has been done, they still have to stay in isolation till their immune system builds up. During this process, there are many concerns (such as Graft Vs Host Disease, infections etc).

Back to my story, on the 19th September, we found out that he has this condition (based on the newborn screening result). We met with Dr Tash on the 20/09/2023 who had told us not to worry and that we have to do another set of blood test to confirm the diagnosis. He then gave us a pamphlet on SCID (done by Immune Deficiency Foundation) but try not to let it affect us. Hearing that made me and my husband feel a little better. We thought maybe his immune system hadn't kicked in yet or perhaps a wrong specimen was despatched under his name. We went home, still researching about the condition but not letting us get affected by it.

Oh, they even told me not to breastfeed Mannat (my second son) as they are worried that I have a virus that can be passed to him during breastfeeding. So I continued to pump every 3hourly to maintain my supply just in case I could feed him at the next appointment a few days later. Psychological aspect, me as a mother who delivered her son 2 weeks ago was emotionally affected that I would cry every few minutes, wondering why did I plan to have a second child, why when I knew I might have defective gene (my late brother had passed on of mitochondrial disorder when he was 13 years old. And I googled and it stated that it might have been passed down to him by one of my parents. I remember asking a Dr if I should do a genetic test to see if I am a carrier and if I was then, I would avoid having a child entirely so as not to go through what my parents had gone through with my late brother), but he told me not to open a can of worms and live life as it comes. Each time I carried Mannat, I felt so guilty that it was me that caused him to have this condition. The fact that he would have prolonged hospitalisations, multiple blood takings, multiple transfusions of IV Immunoglobulin (to maintain his immunity). I would always end up crying and crying. My husband kept on telling me not to cry. But how do you tell a post partum mother not to cry when her hormones are all over the place? He comforted me and told me not to worry and that I need to be strong. I remember telling him that I can't. I have gone through so much for the year (mother getting diagnosed with Alzheimers, mother in law having a heart attack, underwent bypass surgery only to pass on in the hospital due a negligence by the hospital (that's another story), me having bleeding twice while I was carrying Mannat and having terrible round ligament pains)). I found it hard to keep it together.

On the 21/09/2023, I received a Whatsapp message from the Immunologist Nurse stating that a doctor will be contacting us to update us about the result. Dr Liew (an immunologist from MEH) contacted us by a videocall (we requested for a videocall so we can understand better).

During the video call, he told us that Mannat did in fact have SCID. He showed us the results where:

T cells: 0. B cells: 0 NK cells: 91.

I was starting to tear up. I tried to control it as much as I could. My husband was trying to show a brave front but he was tearing too. I asked the Dr if it was related to what my late brother had as some of the symptoms was what he had (not growing, had chronic diarrhea, he was not able to keep food in, vomitting.) He told me that it was highly unlikely but they will consider screening him for it once they have treated SCID. He reassured us that a bone marrow transplant would usually treat this condition. I asked him about my IgG result to see if I could breastfeed Mannat and he apologised as he was not able to trace the result as he was in his clinic that was in MEH. He then told us that he would be meeting us at the hospital on 25/09/2023 and high chance that Mannat will be admitted due to his blood result. He would be given IVIG and some blood tests will be done and he will be discharged within a few days.

All I did in the next few days was cry and seek comfort in my best friend at work. She gathered information and shared them with me. Some of the things that she had shared was Mannat will definitely need a bone marrow transplant, require hospitalisation for almost a year (based on her oncology friends input) as the bone marrow had to be engraved into Mannat before he would be allowed home. Her oncology friend had shared that she had seen only 2 of such cases. One of them was a foreigner and the other was a local. I sighed at this news. I remember planning to resign after my maternity leave to look after my children. I wanted to be there during their milestones. I did not planned this to happen. But now, looking at the bright side of things, I would see Mannat's milestones one on one. Downside of it, my husband will not be able to see alot of his firsts.

Since the diagnosis was confirmed, we isolated ourselves. Mannat and myself were in another room. We didn't let Akaal near him as much. I remember bringing Mannat home and Akaal was so jealous of him. He didn't want to touch Mannat. He didn't want Mannat to use his baby cot, his room (the room we are currently in was originally Akaal's playroom). But as time went by, I could see how Akaal would be so intrigued by Mannat. Wanting to see him and touch him. Each time, when the door opened, he will rush in and see Mannat and exclaimed, "Baby!" He even tried to climb up the bed to be beside him but we pulled him away. The closest he got was to touch Mannat's hand (mittens on), and shake his hand lightly n said, "baby!!!" and he proceeded to touch his feet (booties on). How I wished I had taken a video of it. It was so sweet. My helper, Khawl, came in to take him away. I immediately took away the booties and mittens to wash them. Not to worry. I have been monitoring him every day. He is afebrile, no cough, runny nose. However he does have vomitting (Dr mentioned that it might be due to not burping well enough and there is nothing to worry about).