Below is the store of Akuminto, as shared by her mother 💗
My name is Sisipho Mjongile, and I'm from Cape Town, South Africa. I'm a Mother to an Angel Baby, Akuminto Imihle Mjongile.
Akuminto was born on the 20th of May 2025 in Mawbray maternity hospital at 16:14 pm. Soon after birth, I recognised that on the left hand, she had missing skin on her fingertips. I called the doctor to see, and the doctor said it may be just a minor, maybe the baby was sucking her fingers while she was inside. I said ok went to the ward to get some rest with my baby is right on my chest for the skin-to-skin bond after birth. At night, I'm changing my baby's nappy, and I find a blister in her stomach and missing skin on her hands and elbows. started shaking and was shocked. I called the nurse, and the doctors came, and they said the baby needs to be taken to high care immediately to be admitted. After that time, I'm still having after-birth pains. Oh my god, what's going on with my baby? On the 21st, the Mawbray doctors were in touch with the Dermatologist from Red Cross Hospital, so they were sending pictures of the wounds, and they were told that the baby has Epidermolysis Bullosa. The baby needs to be on dressings, so they sent the dressings. I was so shocked because I had never ever heard of this disease. Immediately, my baby was taken to the ICU in an isolation ward. I was so shocked, I never thought a skin condition could be so serious to the point that we could be in the ICU. She was so strong and beautiful in that incubator. The Dermatologist from the Red Cross came to us in Mawbray. She explained to me about the EB, and its subtypes, so she did a biopsy test. I was exclusively breastfeeding, so I had to hold Akumi, but I noticed that even holding her during breastfeeding it was causing her blisters under her arms. That means her skin is fragile. The other day, while I was breastfeeding, I found some blood coming out of her mouth. I stopped and checked that it was her gums. I cried out loud, calling the doctor. Her mouth was also sensitive
. They put the feeding tube in her, and the bum area also started having a blister. Along with the back of her neck, things started getting worse. We were using the paraffin gauze dressing it wouldn't stick on her wounds, but it was just digging into the wounds, making them worse. I was complaining to the doctors about it, but they couldn't do anything because it's the only dressing they have. I didn't like the fact that my baby had a feeding tube, so I was trying to breastfeed her. At first, I noticed she was not taking it to her mouth because it was sore, but as time went on, she was fine with breastfeeding, and I was taught how to do her dressings very well. We were discharged after 3 weeks. Then we were attending the Redcross Hospital 3 days a week-Monday, Wednesday and Friday. Then we were referred to Peadspal for support because it's a devastating disease, and no cure. So we got the biopsy results that she was having Junctional EB, and her voice was now hoarse, and she was losing her fingernails and toenails. Every day, there were new blisters and pain. Every day, she was on morphine for pain. Sometimes her fingers and toes would smell because of infection; that would hurt me big time. We went to ENT clinic in REDCROSS so that they could check her esophagus. She had blisters in there as well, but they were not too big, so she was fine. She was feeding and breathing well, but she was struggling to gain some weight. Her birth weight was 3,66kg, and she was getting lower than that, or just remained on her birth weight. So we were also seen by the dietician to help with that.
She was just a strong baby girl because she was going through pains.
I got to know everything about EB and the Junctional type that she had. I just accepted and loved my baby the way she is, enjoying her life while she is still with me. She was reaching 3 months when she started having the baby talks, and she would look straight in the eyes while doing that; she was smiling and laughing. I was so amazed and enjoyed having her. Then on the 21 of August, soon after she entered her 3rd month, we were admitted to Redcross hospital in the high care unit. It was her appointment date in Peadspal and in Redcross for her dressings, and being seen by her Dermatologist. We started in Peadspal the baby was fine, and I noticed nothing wrong. Then we went to Redcross it's just across the road, but they transported us there. When we arrived, the baby was crying nonstop. We were in a lift with a nurse when she recognised that the baby was not breathing well. Then we rushed her to the Emergency unit to be hospitalised. The baby was diagnosed with a lung infection, and they also said she had no blood, so they did a blood transfusion. To me, in my mind, I just knew that it was a very hard time because I read a lot about the Junctional EB. She was on CPAP oxygen, and on day 1, she didn't sleep at all. She was crying and moving all the time the whole night. We didn't know what was wrong. On day 2, I noticed she was breathing with her mouth, and her mouth had sores on the inside. My baby was also pale on the face; she couldn't breathe while she was on oxygen, so she died right in my Arms
on the 24 August 2025.
on the 24 August 2025.
This is the wrist I found with missing skin in the night
The missing skin on the fingertips
Starting of the blister in the bum area
That's how the gums looked after bleeding. She was on a feeding tube after bleeding, that's how the whole body looked like without dressing, while we were in Mawbray Hospital, that's how the bum side was, and the toenails before they were infected
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