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The amazing story of Hiba who touched the hearts of many.
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For the last few weeks Hiba has been the most spoken word within our organisation amongst our staff, volunteers, donors, nursers and doctors.
Who ever meets Hiba, she reminds in their minds. Despite Hiba's condition, her smile was warming our hearts and her eyes spoken thousands of words. It was like she was saying "don't worry all will be fine". Her energy was full of peace and calmness. Almost like she was just accepting anything that happens to her. Almost like she knew more than we know. She was as calming as somebody knowing there is something greater than what we know.
Yes, this is Hiba. :)
Hiba had been incredibly cared for by her loving mother Rukia who also has three other children.
Rukia (mother of Hiba) suffered with her pregnancy from the start. As the pregnancy progressed, she felt lots of pain. She prayed nights and days for her baby to survive. She was telling us she could not walk anymore but the time for the birth was not yet there.
The mother knew why she needed to name her "Hiba" - the Arabic word for "Gift from God".
When Hiba was born, she had complications right away.
When Hiba stopped breastfeeding, her mother noticed that Hiba's colour is turning to black. Hiba started to be very weak and was falling sick. Rukia kept coming to the children's hospital, but after doing all the possible blood tests, they had no idea what it could be until one doctor advised her to contact a certain heart specialist in Mulago hospital.
In April 2015 Hiba has been diagnosed with Tetralogy of Fallot .
"A VSD is a hole (defect) in the wall (septum) separating the pumping chambers of the heart (the right and left ventricles). Patients usually have one VSD but may have more than one.If the pulmonary stenosis is left untreated, the right ventricle muscle gets thicker (right ventricular hypertrophy) to try to push blood through the narrowing around the pulmonary valve. When the right ventricle muscle is too thick, it also blocks the flow of blood to the pulmonary artery, and the amount of oxygen in the child’s blood continues to decrease.
Eventually, the child may have what are called “tet spells,” during which they may lose consciousness, experience seizures, have heart failure, and be at risk of death."
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| Hiba's appeal at the New Vision Saturday Children's page |
Her mother was desperate to help her child. The only way for Hiba to survive was to have a surgery. She was told by the doctors that she either has to find 15 million Ugandan Shillings (£2,700) and have it done on the private basis, or she has to wait for the government sponsorship, which has a long waiting list of patients, but Hiba did not have enough time.
Rukia woke up every morning and started to move to every single suggested organisation, group or a club that could help her with raising the funds for the the surgery.
She moved up and down with her baby in her arms, but she was always told to wait or come back on different days.
Every time her baby experienced the painful attacks Rukia was loosing hope. Seeing your child in agony, and there is nobody to help, must be beyond any pain one can feel for their baby.
She contacted every single newspaper and TV she knew about with request of help. None of the newspapers came back to her, until the national newspaper New Vision decided to print her appeal two months ago in September.
She moved up and down with her baby in her arms, but she was always told to wait or come back on different days.
Every time her baby experienced the painful attacks Rukia was loosing hope. Seeing your child in agony, and there is nobody to help, must be beyond any pain one can feel for their baby.
She contacted every single newspaper and TV she knew about with request of help. None of the newspapers came back to her, until the national newspaper New Vision decided to print her appeal two months ago in September.
When Whisper team was at the Nile Crescent village meeting Sam - the head of our outreach team, was approached by Hiba's father with the newspapers.
Sam gave his number to him and said he would talk to me about it.
Sam gave his number to him and said he would talk to me about it.
The same night Hiba's mum called Sam and he told her to come to the Nile Crescent village, as Whisper organised a household fumigation there, so we can see her.
She was there as early as 7am waiting for us. That was the first time I saw the little angel.
I said to Rukia that we could help with some amount of money, but not with the full cost as the amount was very big.
Rukia was explaining to me how Hiba is getting weak, she feels always cold and falls sick.
I said to Rukia that we could help with some amount of money, but not with the full cost as the amount was very big.
Rukia was explaining to me how Hiba is getting weak, she feels always cold and falls sick.
When I was leaving, Hiba just whispered to me "thank you" and smiled.
I didn't think we could raise the whole amount for her surgery, as Whisper was not budgeting for it, but I felt it was our obligation not to ignore it.
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| FB post from 23rd of September looking for some suggestions from the Whisper's team. |
Miracles do happen and the next day we were calling the mother that we are donating her all the funds for Hiba's surgery.
Hiba's mum prayers were answered!
I don't think there was not a day that she forgot to say Thank you to us.
I don't think there was not a day that she forgot to say Thank you to us.
Sadly, the situation started to get quiet challenging. No matter how much we tried to contact the doctors that we have the funds for the surgery, it seemed very hard to reach them.
It took two weeks when one of the doctors told us to come either on Tuesday or Thursday to the hospital.
Early morning on Thursday, the Whisper team together with Hiba and her mum went to the Mulago hospital in Kampala. Sadly, nothing happened and they sent them back saying to come back next week on Tuesday. Hiba was getting worse.
The following week, Rukia and Hiba attended the hospital as early as 7 to make sure they didn't miss the doctors. Unfortunately Hiba's condition worsened and she ended up admitted, and questions about Hiba's surgery stayed unanswered. Nobody knew anything, nobody did anything... (Hiba was admitted at the heart institute department, and all the costs for her admission and treatment was covered by Whisper.)
After about 6 days, Rukia called me that Hiba was discharged from the hospital and sent back home. She was given an appointment to go back at the end of the month, after Hiba's flu is over and her heart gains strength..
I started to get inpatient and decided to do anything in my power to help this girl.
I asked Rukia if she accepts to stay with me, until Hiba gets well. I said we can give her lots of fresh juices and fruits, so she can recover from the flu and body weakness and gain stronger immunity.
I asked Rukia if she accepts to stay with me, until Hiba gets well. I said we can give her lots of fresh juices and fruits, so she can recover from the flu and body weakness and gain stronger immunity.
Rukia and Hiba came to stay with me on a Sunday night. Hiba had a very low appetite. I made for her a home plumpy nut (a mixture of a ground nut paste with peanut butter, sugar and some dry milk) to eat something nutritious. Peanut butter and eggs was something Hiba could eat.
It came to a Monday morning, and Hiba appeared just happy. She quietly played with some toys and smiled. I took beautiful pictures of her and I was glad that she looked stronger than the days before.
It came to a Monday morning, and Hiba appeared just happy. She quietly played with some toys and smiled. I took beautiful pictures of her and I was glad that she looked stronger than the days before.
The same evening, when I was doing some computer work, I hear that Hiba struggles to breath. Her mum put her on her left side and told me this is the position she should keep Hiba when she gets the attack.
I asked her if we should go to the hospital, but Rukia refused and said she will be ok.
But Hiba was not going to be ok.. Hiba started to cry and scream in pain "mama mama".. her cry was constant and she was getting worse. Hiba's organs started to weaken. When Hiba started vomiting I knew we may loose her if we don't do something.
I took them right to the hospital and called our friend Ritah, a clinician who volunteers at the children's hospital, to come right away and help Hiba.
When we got to the emergency department, Hiba's heart beat was getting slower and slower. I explained to the nurse she had a hole in her heart and she needed urgently oxygen. Angels must have been with us, because despite the big queue of other children, Hiba was taken to the care right away and put on the oxygen. Ritah also arrived, she put a white coat on, and started to attend to her....
After few minutes Ritah said: "at this point I prepared the mother for the worse and she knows it.. she knows that her baby with this condition can die at anytime. The mother is strong, and she knows it all"
"Hiba's heart rate is 30 beats per minute right now, when it goes down to 20, it is the end.. "
Then she uncovered her hand "you see her finger tips, they turned completely blue and her hands are getting cold". That moment I just stared at Ritah's face. Then she said: "we have done all we can... now Hiba is in God's hands".
Then she uncovered her hand "you see her finger tips, they turned completely blue and her hands are getting cold". That moment I just stared at Ritah's face. Then she said: "we have done all we can... now Hiba is in God's hands".
I went outside crying and thought of how strong she was that morning, I pictured her smile and I just prayed to God she will come back to us. I said please God, please heal her, let this angel be strong.
I believed it was over.
After few minutes Ritah was coming to me with a smile telling me she is improving, her heart was then 40 beats per minute...
After few minutes Ritah was coming to me with a smile telling me she is improving, her heart was then 40 beats per minute...
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| One of the Hiba's loving smiles to her mother |
For the next three days I was coming to the hospital many times a day to check on Hiba and her mother. Hiba was admitted at the emergency department. Her heart rate improved a lot and she loved to drink a mango juice I also saw her mother Rukia, how strong she was, she basically stand by Hiba's bed the days and nights. I was told by Ritah, that Rukia does not sleep, she is just with her baby all the time. Unfortunately Hiba was getting frequent heart attacks. Each attack was making her health worse. During each attack Rukia was holding her baby so tightly, worried she was going to die.
After every each painful attack baby Hiba wanted to be close by her mum. The connection and the love they feel for each other is unconditional. Hiba would put her hand on her mum's chest to feel her mum's being close to her.
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| Vanja with Hiba |
Vanja, who spent the night at the hospital with other admitted baby Muzaphar. She said to me "come right away, the power is off, no oxygen for Hiba". She also said as soon as she realised the power went off, she went to check on Hiba. She found Rukia crying in between the door in the darkness inside the flooded hospital.
It was raining heavily. The power was nowhere in town. I rushed quickly to pick them all and took them to the private hospital that had a power generator.
Baby Hiba was extremely weak, her heart rate went down to 28 beats per minute. We were just so scared.
When we arrived to the hospital, the power was off, no doctors were seen, its like the hospital was asleep. I had to make some noise to get people up. I was told by the doctor to leave and take the child somewhere else, just because I was not happy about them having no sense of urgency what so ever.
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| At the transport to the Mulago Hospital |
That morning I made an online appeal for extra donations to take Hiba to the hospital in Kampala in the ambulance. This same hospital quoted us 600.000 (£111) Ugandan Shillings for the transport with oxygen and another 100.000 (£18) for all the medication they gave Hiba.
Although their ambulance was out of function they did not accept to take her in our own car, but they used some other personal car, and reduced only 100.000 Ugandan shillings on the transport.
The same day I got number for Hiba's heart specialist Dr Tenywa. He knew all about Hiba's condition and told me he admitted the child at the hospital the same day. When I asked about her surgery, he only replied it was a long story. He seemed he didn't want to spend much time talking to me on the phone.
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| Rukia is very strong, but this night she thought it was the end for her baby.. |
I saw Hiba, she appeared so happy and beautiful. She was talking to me and asking where Yasmina (my daughter) was.
All of the sudden I saw many doctors surrounding Hiba's bed including the heart specialist.
I introduced myself and told him I was the one who he spoke to on the phone and also I am the director for the NGO who sponsors Hiba for her heart surgery.
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| Hiba with her teddy bear given to her by Whisper |
I wonder what the problem was, the money for the surgery was there, but Hiba was not even put on the waiting list nor considered to have one.
He explained to me, that she was pushed up to February next year. With tears I said if that was the case, we were taking her for the surgery to Kenya, and we needed the referral from them.
I said I needed this baby to live and we have a little time!
She could have up to three attacks per day. She was getting weaker and weaker and her weight was getting lower and lower. When the child goes under 10kg, she cannot be operated anymore.
Hiba's weight was 11kg. I have already started to investigate all about her transport to Kenya and got all contacts needed.
Hiba's paediatrician then said to the heart specialist "doctor, we have to decide now if we are going to operate this child or not"...
Within next ten minutes the heart surgeon appeared.
He took all the details, explained to me that getting Hiba to have a surgery out of Uganda will be a long and very costly process. He said that the president of Uganda must know the reason why the child was not operated from Uganda, if they have the means to do so.
He said he could not confirm for sure that Hiba would be operated as soon as the next week, because the list was full, but he said not all patients turn up for the surgery and he said they may do it as early as next Tuesday, November 3. I just pleaded to them to do whatever they can. >>> Shortly after this, Hiba got another painful attack... This was the most horrifying thing to watch...
When I came back to Jinja, nothing was on my mind but Hiba. We all kept calling the doctors that night to know all about their decision.
The same night, mother of Hiba called me and said that a big team of doctors appeared again and again to examine Hiba. She was finally confirmed the surgery for Tuesday.
Ever since we kept calling the doctors every day to make sure the plans have not changed.
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| Tanja, Hiba, Rukia and me; the day before the surgery |
On Monday, November 2, I went to Mulago hospital to pay the deposit of 10 Million Ugandan Shillings for her surgery (£1851).
Her mother seemed so much more in peace now.
She said smiling that Hiba had no further attacks since Friday.... It was like another small miracle. .. almost like the angels again protected her to get strong for the big day of her surgery.....
The next day I spoke to the doctor and he confirmed her surgery was a successful one.
We could not wait to see Hiba so on Wednesday we went to see her to the hospital. Rukia was full of smiles!! It was beautiful to see!!
I have not seen Rukia so happy as she was after the surgery. She was over the moon. She said her daughter finally changed the colour! She was so proud to show me her fingernails were not blue anymore, and her face was now brown. We all just smiled and smiled... we were leaving the hospital so happy....... Hiba was OK, everything else would be OK.....
Unfortunately the next day I received bad news... Hiba got complications..... and in need of an urgent scan. The scan confirmed that there is a bleeding vessel on her right and left side of the brain. The scan also confirmed a big blood cloth on the right side of her brain. Hiba got paralysed.. by then the only person who communicated to us was Rukias' sister - Hiba's aunt. Mama Hiba stopped answering her calls and the whole night kept crying thinking her child would die.
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| Hiba's mother was full of smiles after the surgery. |
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| Hiba's scan shows the blood cloth |
Hiba's auntie left her 6 months old baby at home, just to be there for Rukia in those difficult times. She told me Rukia spent all night crying believing Hiba was dying.
Yesterday (Friday, November 6) Ritah, Hashim and I cancelled all our plans and went to see Hiba.
Hiba was examined by the brain surgeon and he administered a certain medication that should stop the bleeding. She was given three days. If within those three days she won't improve, she will have to undergo another surgery.
I was so happy to see Hiba again. I was allowed to see her only for 30 seconds. She actually appeared a bit better than I thought... I kept telling her we love her so much, and as i was stroking her hand, she hold it back.
and Hiba woke up... Everyone was surprised and happy... and that is why everyone is now fighting for Hiba to live...
Hiba's mum looked just exhausted. She got very skinny since I saw her at first..
She said to me "I struggled so much for this baby even before she was born, that is why I named her Hiba." Then she continues: "Don't worry she will be fine, God gave me a gift.. He can't take it away from me now" as her eyes filled with tears......... :(
It has been a very emotional experience for me, and I know this is not the end of our journey with Hiba.
She become an inspiration to all of us ..... Hiba - the Gift from God.
Thank you for all your donations towards Hiba. The family is extremely grateful to everyone!
If you wish to donate for her recovery, please donate right here
We love everyone of you who supports Hiba!
Angel Hiba, we LOVE YOU and we hope you will shine with the smile on your face once again!
