Sawda is six years old and lives in Bradford. She was born with a very complicated heart condition and has already had several open heart surgeries to save her life.
Mum Attika tells us about Sawda’s journey with CHD so far and how she has been helped by CHSF along the way.
Sawda’s Story
Written by mum Attika
Before Sawda, I had a child with a complicated heart condition, and I lost her. I was told then if I had a child again, I was to have congenital fetus heart scan. That’s how I found out Sawda had a heart condition, at my 16-week scan.
Born via caesarean section, we were then told Sawda had a very complicated heart condition that consisted of a number of different heart defects:
• Double outlet right ventricle heart disease that is present from birth (congenital) The aorta connects to the right ventricle (RV, the chamber of the heart that pumps oxygen-poor blood to the lungs), instead of to the left ventricle (LV, the chamber that normally pumps oxygen-rich blood to the body)
• Transportation of the Great Arteries A condition where the two main blood vessels leaving the heart, the pulmonary artery (which takes blood to the lungs to pick up oxygen) and the aorta (which takes blood from the heart to the body) are swapped over or switched.
• Pulmonary Stenosis When the pulmonary valve (the valve between the right ventricle and the pulmonary artery) is too small, narrow, or stiff.
• Ventricular septal defect There is a hole in the wall (septum) that separates the two lower chambers (ventricles) of the heart. This wall is also called the ventricular septum.
Sawda’s heart condition was too complicated to be corrected. She initially underwent a palliative procedure to improve the blood flow to her lungs called a Blalock-Taussig (BT) shunt when she was 10 days old.
Sawda at one week old
At only 10 days old, doctors decided they needed to operate on Sawda to try and save her life.
Before she was born, we were told Sawda might need surgery straight after birth and on day 11 she went into theatre, critical. We were told to hope for the best.
The surgeon who performed Sawda’s operation said they didn’t know how she made it out from theatre alive. They thought they would be coming out with bad news. Sawda’s oxygen levels were at 30% when she went into theatre – when she was born her oxygen levels were 90%. We were told after surgery we would have to wait a bit to see if she would have further problems as her oxygen levels had been so low.
One day after her surgery, Sawda was off the ventilator and the BT shunt procedure had started to show it was working. After this her oxygen levels increased, up to 90%, and we were home just 14 days after surgery! Sawda was seen regularly by the hospital until her next surgery a year later.
At 8 months old, Sawda started to get poorly
Sawda in hospital, the day before surgery
We knew that, although initially successful, the BT shunt wouldn’t grow with Sawda. The BT Shunt is a small plastic tube, only a few millimetres wide, that is used to create a pathway for blood to go from the heart to the lungs.
As Sawda grew and got more active, her oxygen levels started to drop. Levels would get to around 60% but doctors wanted Sawda to grow a little more before they operated on her next.
In March 2016, Sawda got ill. She had a temperature and was vomiting but it was important Sawda did not dehydrate because her BT shunt would get blocked. She vomited for a whole day and her temperature wouldn’t come down, so we went to our local hospital.
Unfortunately, Sawda got seriously ill while in Bradford hospital – she caught Nora Virus A and B. As days went by, her oxygen was getting lower, and she was getting bluer. Doctors and nurses did everything they could, but nothing worked. She was on 100 litres of oxygen, but her levels were not getting above 30-40%.
It was then that Bradford said they couldn’t do any more for Sawda and she would need specialist treatment. She was blue lighted to Leeds at 1am where she was admitted to Ward L51.
After we arrived at Leeds, Sawda was scanned, and we found out the problem. Her BT shunt was blocked due to her dehydration and that was the reason her oxygen levels were getting worse. Treatment started through the night where doctors prescribed Heparin to help reduce the blockage in the BT shunt.
In the days to follow, Sawda’s condition got worse. She could only have surgery six weeks after her Nora Virus infection, but for Sawda it had only been two weeks. That meant for four weeks we had to just wait it out in hospital.
Every day was a test. Doctors couldn’t do anything more; it was just a waiting game. Sawda’s oxygen levels were down to 20% on 200 litres of oxygen, and we were told again that she could develop a lot of problems with her levels being constantly so low.
It was four weeks post infection when Sawda flat-lined. We were told they would have to take her into theatre for a procedure. They told us they hoped that it would work for Sawda but if not, they were really sorry. It was the same surgeon we had met previously. The same words, “I will try my best”.
The four hours we waited were agonising; waiting for our daughter back. The procedure she was having was called the Glenn Shunt procedure. This operation replaced her BT shunt with another connection to the pulmonary artery.
Sawda did well and she was off the ventilator quite quickly. Her oxygen levels picked up and she was allowed home after just a week.
Sawda after her second heart surgery
From 2016 until 2021 Sawda was still seen regularly, but Sawda carried on with life. She travelled to Pakistan to see her grandparents. Went to Turkey and Morocco. She was doing things like a child her age should be doing. She found school hard as she couldn’t run like other children. She got breathless easily, she couldn’t go on school trips along with many other problems.
It was decided Sawda needed surgery again and 2021 was the year we were waiting, and the year Mr Osama Jaber came into our life. A person we as a family are forever grateful for. He gave me Sawda back.
Sawda had here third heart surgery in 2021
We received our date for surgery. 9th September 2021 was the day Sawda was going to be operated on again.
Mr Jaber told us had a number of plans for the surgery, but he wasn’t completely sure until he had Sawda open which plan he was going to through with.
13 hours we waited to find out if Sawda was going to make it. She did make it and I was hoping and praying that now this surgery would give her a good chance at life.
Sawda had a Biventricular Repair. This repair involves converting a patient’s heart that has been treated with single ventricle palliation to a heart with two pumping ventricles.
After this major surgery, Sawda had many ups and downs, but she made it through. We know that without this surgery, Sawda had no life.
Sawda will need more surgery in various stages of her life, but she won’t needing major surgery like she had in September 2021. We are forever grateful.
Sawda went back to school in November. She’s now really excited to be able to participate in PE and she’s the happiest I’ve ever seen her. As she got breathless so easily, she used to hate going to school in a pram, but she walks to school now.
The smallest things can make a child like Sawda happy. For example, she played in the snow recently for the first time ever. We didn’t have to worry her oxygen levels dropping or if she would catch a cold.
Children Heart Surgery Fund has helped me so many times. I had never heard of CHSF until I got pregnant until 2014 and I met someone from the charity when I gave birth to my daughter on the Neonatal Unit. They sat down with me and just talked. It was just a random talk as to how I was feeling and how I was coping.
Sawda ready to go back to school in Nov 2021
CHSF told me they had accommodation in the hospital that I could use because I lived far away, and my daughter would have to stay a while in the hospital. The accommodation was a great help – especially during the days she was critical. The welcomes packs are also such a sweet gesture from CHSF, especially when you come to hospital in a hurry, and you don’t bring much with you.
Family Support Worker Sarah looks after heart families whilst ont he ward as well as once they go home
Sawda dressed as Mr Jaber for Hero Day
I personally am a coffee addict – without it I can’t survive! When things are tough, coffee keeps me going and that’s how CHSF got me to open up to them.
CHSF’s Family Support Worker, Sarah Cherry, I have no words for her! I met Sarah in September 2021. A fantastic team like CHSF need hardworking staff members who go above and beyond for the families on the ward. I can say they have definitely found that in Sarah Cherry.
Sarah really helped me cope when I was told Sawda wasn’t going to make it. She just listened, and we talked about random things that day I will never forget. I was at my lowest. If I didn’t have Sarah that day, I don’t know what I would have done as my husband had to go back home as our other daughter was unwell.
Sawda left the ward in October 2021 and I’m still in contact with Sarah today.
We are forever grateful for every person we have met through this journey.
DID YOU KNOW?
Over 17,000 babies, children and adults from all across Yorkshire and N. Lincolnshire are treated at the Leeds Congenital Heart Unit every year.
The world-class facilities at the Leeds Congenital Heart Unit have been supported by CHSF since 1988 but sadly, the fact remains that poorly children with critical heart conditions are still born every day in our region. In fact, almost 1 in 100 babies are born with a heart defect.
Please help us to continue saving the lives of young heart patients like Sawda by donating to Children’s Heart Surgery Fund.
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