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A COUPLE diagnosed their young daughter’s cataracts – because their pet dog suffered the same condition.

Kayleigh McCann, 25, and Daniel Bruton, 26, from Birmingham saw the same grey eyes in little Grace, as boxer Molly.

The first-time parents kept a close watch on the youngster but after a few weeks when Grace’s pupils remained the same colour, they told their GP about their concerns that it might be cataracts.

Yet it took nearly a year for medics to finally diagnose Grace with the condition – which is rare in children.

Now Grace, aged five, is getting the help she needs at Birmingham Children’s Hospital, where doctors are desperately trying to save her sight.

“We knew something was wrong with Grace’s eyes when she was born because of the experience we’d had with Molly,” explained Kayleigh, speaking out to raise awareness of the condition amongst children and to highlight National Play Week.

“The dog’s cataracts were well established. It was Daniel who it first dawned on as Molly was his mum’s dog, and I agreed immediately.

“We also had other relatives who had cataracts so knew the classic symptoms.

“If it hadn’t been for Molly we would never have known about the condition.”

The couple took the tot to their GP to tell them they believed it was cataracts, but they were told they were paranoid new parents.

“We knew that something was wrong with our little girl and we weren’t going to give up,” Kayleigh added.

Still convinced something was wrong, Kayleigh changed doctors and was referred to the Children’s Hospital where her condition was confirmed. “I felt a huge sense of relief that we finally knew what was wrong and could now move forward,” Kayleigh said. “Grace’s vision had been severely affected.

“She couldn’t see out of her left eye and there was only 25 per cent vision in her right eye. Everything she could see was very misty and blurry. She needed an operation on both eyes to remove the cataracts.”

Consultant ophthalmologist Manoj Parulekar carried out the sensitive surgery on Grace, in which she received lense implants.

And now the race is on to save the sight in her right eye as she suffers from epilepsy which was masked by a brain condition.

Kayleigh explained: “Grace has to wear a patch to help improve her vision and make sure she doesn’t go blind. Emma Hughes, a therapist in the play centre has helped to coax Grace back into hospital as she has developed a fear of them following her previous experiences.

A haemangioma is the most common type of birthmark. It is a collection of small blood vessels forming a lump in or under the skin.

Haemangiomas can be superficial with a raised, red area in the skin referred to as strawberry mark, or they can be deeper in the skin, appearing as a bluish swelling of abnormal blood vessels underneath. Some haemangiomas are a combination of the two types.

Most haemangiomas do not cause any problems, but children who have large or growing haemangiomas near the eye should be referred to an ophthalmologist.

What causes a haemangioma?

There are several theories. One suggestion is that haemangiomas might occur due to implantation of placental tissue into the skin of the developing foetus. Haemangiomas are believed to occur in up to ten per cent of babies, and are more common in girls, premature or low birth weight babies and multiple births. Haemangiomas are not inherited.

How do they behave?

Haemangiomas typically appear in the first few weeks after birth, and grow rapidly in size and redness for the first six months, and then start regressing (shrinking and becoming less obvious) after that. Deep haemangiomas tend to appear slightly later, often up to six months after birth and can remain active for longer, often beyond one year. Most haemangiomas have regressed by seven to ten years of age. The head and neck are common locations, particularly around the eye.

Are they different from port wine stains?

Yes, they are different. Port wine stains are flat lesions that do not grow or shrink without treatment, and can sometimes be associated with glaucoma if present around the eye.

How can haemangiomas affect vision?

Haemangiomas occur when a young child’s vision is developing rapidly. A haemangioma near the eye can sometimes press and alter the shape of the eye (astigmatism), resulting in a blurred image. The brain then ignores the blurred image, preferring to “pay attention” to the clearer image from the unaffected eye. This can lead to the eye near the haemangioma becoming “lazy”. Similarly, if the haemangioma causes a droopy eyelid partially covering the pupil (ptosis), it deprives the child of the usual visual stimulation  and causes “lazy eye” (amblyopia).

This can be treated by forcing the brain to use the lazy eye, by patching the good eye for several hours a day or blurring its vision with eye drops. This treatment is really important to ensure that vision develops well in both eyes.

Treatment of haemangiomas

Propranolol is a medicine for reducing blood pressure that has been in use for several decades. More recently (since 2008) it has been shown to be very effective in treating growing haemangiomas and is now the mainstay of treatment. It works on the chemicals that promote the growth of abnormal blood vessels, and is very safe and effective. The effect is seen within days to weeks, and treatment is usually required for six to 18 months.

Propranolol is prescribed as a liquid medicine to be taken orally, twice daily, and is available in several concentrations. Common side effects include cold hands and feet and diarrhoea,  and less common side effects are night terrors, asthma (very rare) or low blood sugar. Low blood sugar can be avoided by skipping a dose if food intake is reduced for any reason.

In the past, steroid injections into the haemangioma or oral steroids were used to treat haemangiomas, but these approaches are rarely used nowadays.

What about surgery?

Surgery might be appropriate for well localised haemangiomas or for the loose skin and fibrofatty tissue that is sometimes left behind after large haemangiomas have been treated with Propranolol.

Where is treatment offered?

Propranolol treatment for haemangiomas around the eye is now offered in most hospital eye departments in the United Kingdom, and is usually supervised by the paediatric ophthalmologist, an ophthalmologist who specialises in treating children’s eyes.

It is important to monitor how clearly a child can see at a distance and close up (their visual acuity), check whether the eye is bending light to give the sharpest image possible (the refraction) in order to detect a lazy eye, and then prescribe glasses, patching or both as needed.

Haemangiomas elsewhere on the body are treated by dermatologists or plastic surgeons. Larger centres such as Birmingham Children’s Hospital also offer surgery for haemangiomas, usually by a paediatric ophthalmic surgeon, or oculoplastic surgeon, or plastic surgeon.

The author is a consultant ophthalmologist at Birmingham Children’s Hospital. This article was first published in issue 50 of Insight, RNIB’s magazine for parents and professionals supporting blind and partially sighted children and young people.

Kathryn Cartwright turned 21 on 21st January, a landmark birthday she couldn’t wait to celebrate with her family – and this birthday was all the more poignant as it is one she and her family never thought she would see.

At 16 Kathryn was diagnosed with Acute Myeloid Leukaemia (AML) and in the four and a half years since her diagnosis, Kathryn has stunned doctors with her ability to not only battle the leukaemia itself, but she has also made medical history.

She has undergone several cycles of chemotherapy, radiotherapy, two bone marrow transplants and a liver transplant and has to take a daily cocktail of drugs to help alleviate some of the associated problems.

Kathryn was diagnosed with AML in July 2007 after beginning to feel very tired and looking pale. The initial thought was that she may be anaemic – but when her GP carried out a blood test that showed she was severely anaemic, she was referred to Birmingham Children’s Hospital for further tests which revealed she had AML.

Kathryn started a cycle of chemotherapy but doctors at the hospital discovered that she had a particular high risk chromosomal abnormality. In simple terms, this meant that because of the missing chromosome in her leukaemia cells the chances of the chemotherapy curing the disease would be reduced greatly. The best chance of cure would have to come from a bone marrow transplant. Luckily her older sister Christine, 18, was a match and in December 2007 she had her transplant at BCH. This resulted in her leukaemia going into remission and Kathryn returned home with her parents, Judith and Alex.

Sadly, just four months later she discovered a lump on the side of her head which showed that the leukaemia had returned. Kathryn returned to hospital for further treatment and to discuss the options available to her. The only curative option available was to consider a second bone marrow transplant. It is rare to do a second bone marrow transplant though as the risks are higher and Kathryn and her family were warned that there was only a one in five chance of her surviving the second transplant.

Kathryn adds:

“We couldn’t see that there was another option – to go ahead with the second transplant was risky, but it would still give me more of a chance than doing nothing. Without treatment, I would have died. I preferred a small chance than no chance at all.”

So doctors started Kathryn on a course of chemotherapy and radiotherapy to prepare her body for the transplant once they had found a match. A match was found from a young German male and in July, Kathryn received her second bone marrow transplant. The transplant started to work but she developed Graft Versus Host Disease, which badly affected her eyes and skin. She became incredibly photosensitive and had to spend a month in a dark room at home, only leaving to return to BCH’s Eye Department, where Consultant Ophthalmologist, Mr Manoj Parulekar, treated the painful condition.

Then during Halloween 2008, Kathryn had a high temperature, so was admitted to hospital. Two days later her eyeballs went yellow. Tests revealed that Kathryn had developed Graft Versus Host Disease in her liver and it had started to fail. By December, Kathryn was desperately ill in Birmingham Children’s Hospital in end-stage liver failure and wouldn’t be alive to see Christmas without a liver transplant. She went to the top of the supra urgent transplant list and on 21^st December, the call came through that they had been waiting for saying that a liver was available. She underwent the eight hour operation and started her long road to recovery.

The liver was quickly accepted by Kathryn’s body and her leukaemia was also in remission which was great news for Kathryn and her family. But there were more surprises in store for them. Routine tests on her blood two weeks after the liver transplant showed that the second bone marrow transplant was being rejected and other stem cells were taking their place. Doctors at the hospital were baffled as the stem cells didn’t appear to belong to either of her bone marrow donors. Further tests revealed that the stem cells from her new liver had fully engrafted into her bone marrow, effectively replacing Kathryn’s own cells – an incredibly rare occurrence and, as far as doctors are aware, she is the first person in the UK this has happened to. There is only one other recorded case in Australia.

Kathryn says:

“It does feel a bit weird knowing that the stem cells of the liver donor have taken over my own stem cells and the cells of both my bone marrow transplant donors. I still live with the effects of GVHD, it affects my skin and lungs so I often get breathless and my skin is very delicate. Once a month I travel to Rotherham for photopheresis treatment – which helps my skin and lungs. But I often have to use a wheelchair as I get breathless easily and I take over 20 different tablets a day.”

Kathryn celebrated the birthday she never thought she would see with her family in London – dining at La Gavroche, visiting Hummingbird Bakery and staying overnight at a hotel.

Kathryn will need to have further liver surgery this year as her bile ducts need to be reconstructed by her transplant surgeon, Mr Mirza at the Queen Elizabeth Hospital.

Kathryn’s BMT consultant, Dr Mark Velangi, says:

“Kathryn is certainly the most unique patient I have seen at Birmingham Children’s Hospital. It is the first time we have seen the stem cells of a liver donor fully taking over a patient’s bone marrow. Kathryn sadly still has ongoing health problems associated with the GVHD but there is hope that in time and with the right treatment, Kathryn will overcome it. She is an incredibly brave and bright young lady who we are delighted to see celebrate her 21^st birthday.”

Kathryn says:

“My last milestone birthday (my 18th) was spent in a cubicle on the High Dependency Unit of the Oncology and Haematology Ward at Birmingham Children’s Hospital. I wasn’t able to eat any of the cake or drink any of the champagne, because my gut was nowhere near healed enough to digest anything yet. This birthday was so different. Yes, I’m still not as healthy as I’d like to be, but I am here, and I’m alive, and I’m happier than I could have dreamed of being a few years ago. I’d like to thank my donors, all three of them, and my liver donor’s family especially; I haven’t got words to articulate how much that gift means to me. Also all the doctors, nurses and other staff who have spent the past four and half years taking care of me, medically and otherwise. Without their knowledge and understanding, I would most certainly be in a very different situation, and I appreciate them more than they will ever know. This birthday was spent surrounded by the people I love, and eating all the cake in sight!”

He dis-assembled the machine weighing 60kg, went to the 1-£ (Pound) Shop in England, bought a bundle of bubble-wrap and wrapped the machine parts well. The next layer of ‘wrapping’ was with his thick and heavy winter-clothing, which he would not need as he was coming back to Sri Lanka.

Then it was time to ship the machine, for which he paid £200 out of his pocket and kept his fingers crossed that the machine would be intact when it arrived back home.

He flew back to Sri Lanka in February and the machine arrived a month later in March.

Now the Retcam, the only one in the country, is in the operating theatre of the Eye Unit of the Lady Ridgeway Hospital (LRH) for Children in Colombo. It is a major asset in the diagnosis and treatment of little ones with Retinoblastoma and is at the LRH because one doctor went beyond the call of duty.

It is 39-year-old Dr. Hiranya Abeysekera’s fascination with the human eye and his passion to treat children with this serious condition that made him bring the Retcam without thinking that the lack of this equipment in Sri Lanka is none of his business.

Not only did he return to the country after acquiring knowledge and expertise through his foreign training, but he also brought back this invaluable Retcam, says Consultant Ophthalmologist Dr. Dharma Irugalbandara who heads the LRH Eye Unit where hundreds of children are treated daily.

Sometimes post-graduate doctors who go abroad for training decide to stay on in those countries, the Sunday Times learns.

For Dr. Hiranya there was never a doubt that he would come back to serve the children of this country. From Balapitiya, Dr. Hiranya who had his primary education at Hagalla Maha Vidyalaya, Kosgoda, where his mother too was a teacher, it was to Royal College, Colombo that he came after his success at the Grade 5 scholarship examination. From there he entered the Sri Jayawardhanapura University’s Medical Faculty.

Even as a medical student, he was intrigued by the eye, which he calls “special”.

It is a small organ but it has many, many types of tissue which make up its different layers and integrate to give us vision, he says. “Ophthalmology also drew me because it is an advanced subject linked to technology that changes fast in diagnosis and treatment.”
It is a fast-developing subject and not stagnant, says Dr. Hiranya who interned at the Colombo South Teaching Hospital in Kalubowila coming under the influence of Consultant Paediatrician Dr. Kalyani Guruge and had his first post-intern appointment at the Anuradhapura Teaching Hospital. At the Neonatology Unit there, he realised his potential to work with children, under the guidance of Consultant Neonatologist Dr. Pushpa Kumar.

While working in Anuradhapura, he passed Module 1 of Ophthalmology at the Post-Graduate Institute of Medicine (PGIM). Next he had intensive training at the National Eye Hospital, while passing the other four modules of Ophthalmology and gaining his MD in 2010.
Thereafter, to the Birmingham Children’s Hospital in England considered “one of the best and largest paediatric hospitals in Europe” that Dr. Hiranya proceeded for his foreign training, which is a requirement to become a Specialist. He was on a Fellowship in Paediatric Ophthalmology. “I was lucky to work there,” he says with humility.

Retinoblastoma, a rare cancer which can affect the eyes of children, he studied under veterans John Ainsworth and Manoj Parulekar while training to become a fully-fledged Paediatric Ophthalmologist.

Seeing his devotion to its study and the potential to develop Paediatric Ophthalmology in Sri Lanka and also being sure that Dr. Hiranya would return to Sri Lanka, the doctors at Birmingham had offered the Retcam they were using there, when the hospital bought a new one.

“Something is better than nothing,” says Dr. Hiranya. A new one costs £90,000.

The Retcam has been in operation for three weeks now with about 12 children having their eyes imaged.

As we leave the LRH Eye Unit what comes to mind are the words of a former President of the United States America, John F. Kennedy, which have been proven by Dr. Hiranya in his own way: “Ask not what your country can do for you, ask what you can do for your country.”

A CHARITY worker who survived a rare form of eye cancer is helping children in Kenya battle the same disease.

Abby White, 32, lost the sight in one eye after beating retinoblastoma, but her father was forced to have both eyes removed when he was diagnosed in Kenya in 1946.

It was the Christmas gift her parents feared she would never receive.

Eva Joyce, who was born blind, is able to see her mum and dad for the first time after becoming the youngest patient in the UK to have a corneal transplant.

Four-month-old Eva suffered from Peter’s anomaly, a rare congenital condition which makes the cornea cloudy.

Her parents, Harriet and  Matthew, were worried that their daughter would never be able to see.

Mrs. Joyce, 33, said: ‘When Eva was born and eventually opened her eyes, we realized that her corneas were cloudy.

‘We didn’t appreciate the severity of it, and it wasn’t until we were referred to a hospital in Sheffield the following week and Eva’s eyes were tested that we realised that she had no vision at all. She was blind.

‘We were devastated. For the next 24 hours of her life, we thought she would never be able to see.

‘It is such a rare occurrence  that we were told it was unlikely anything could be done.’

Eva, from Winterton, near Scunthorpe, was referred to  Birmingham Children’s Hospital some 115 miles away, where specialists suggested she could have a transplant.

At just two-and-a-half weeks old, the little girl had her right cornea removed and replaced with a healthy donor cornea in a three-hour operation.

When she was four weeks old, the same procedure was carried out on her left eye.

Six weeks of hourly eye drops followed, and Eva is still taking anti-rejection drugs as her age meant there was an increased risk of her body failing to accept the donor corneas.

But it didn’t stop her spending Christmas at home with her parents and three-year-old sister Jessica.

Mr Joyce, 34, said: ‘From feeling really low at the beginning, it went to feeling quite giddy. When someone tells you your daughter will be able to see, it is quite special.

‘As soon as we turned the Christmas lights on this year, her eyes lit up.’

The family is still making the 230-mile round trip to the hospital every fortnight for check-ups, and Eva will continue to be monitored there until she is 16.

Consultant ophthalmologist Manoj Parulekar said: ‘We look forward to seeing her grow up and do all the things her friends and big sister can do.’

Mrs. Joyce, who is an intensive care nurse at Scunthorpe General Hospital, added: ‘We feel incredibly lucky that someone has made the decision to donate organs to help people like Eva in what must be extremely sad circumstances.’

Firstly…thank you all so much for helping us raise this obscene amount of money.  I wouldn’t have expected for us to have done so well ever.. this took 4 weeks. I remember when the pediatricians diagnosed Shaan’s glaucoma at only 1 day old and immediately got in touch with Dr. Manoj Parulekar who without hesitation invited Shaan into BCH Eye Dept. Rob took him to BCH at 7 am at less than 48 hrs old over to be checked and start on medication straight away.  Rob bought him back to me in Coventry Hospital that day with about 12 different types of medication! it was heartbreaking.  Dr. Parulekhar is a wonderful man who is very caring and a one in a million doctors.  He is passionate about his work and undoubtedly one of our best friends.  He gave us hope and kept us so strong throughout our precious boy’s life. 

All of you have given so generously and I promise that your money has been donated to a fantastic cause.  The Eye Dept, the whole team are good people and deserve a lot.  They were critical for my baby and unfortunately there are many more babies with eye problems.

Keep up the good work… Thank you all so much from the bottom of my heart – Shaan’s mum x

Four-month-old Eva Joyce, from Scunthorpe, North Lincolnshire, was born with Peter’s anomaly, a condition that makes the cornea cloudy.

Donor corneas were grafted on to Eva’s eyes during two operations at Birmingham Children’s Hospital.

It said Eva was the UK’s youngest corneal transplant patient. Her family said they felt “incredibly lucky”.

The first operation took place when Eva was just two-and-a-half weeks old.

Her mother Harriet, 33, said: “When Eva was born and eventually opened her eyes, we realized that her corneas were cloudy.

“We weren’t overly concerned, and it wasn’t until we were referred to a hospital in Sheffield the following week and Eva’s eyes were tested that we realized that she had no vision at all. She was blind.

“We were devastated. For the next 24 hours of her life, we thought she would never be able to see. We were referred to Birmingham Children’s Hospital where we were told that there was something they could do.

“We feel incredibly lucky that someone has made the decision to donate organs to help people like Eva in what must be extremely sad circumstances.”

Eva will be given an anti-rejection drug every day for a few years and hospital staff will monitor her eyesight until she is 16.

Consultant ophthalmologist Manoj Parulekar said: “We are delighted that Eva is doing so well and we are hopeful that her sight will develop as normal.

“We look forward to seeing her grow up and do all the things her friends and big sister can do.”