'They said Jasmin might be brain damaged'

Kathryn Newing, babyworld's Operations Manager, felt her world crumble when her baby Jasmin became seriously ill. For a few harrowing weeks Kathryn and her husband Steve thought that Jasmin might be permanently brain damaged. Read Kathryn's story and why Steve biked around Britain for charity...


Kathryn, 32, lives with her husband, Steve, 40, and daughter Jasmin, now 20 months, in Oxfordshire. At 10 days old, Jasmin started having what Kathryn thought were symptoms of colic - bouts of drawing her knees up to her stomach and crying inconsolably. But, a month later, Jasmin had an attack which proved that she was suffering from a rare and much more serious illness.

• Kathryn tells us what happened...
• Help to raise money for the cause
• Infantile Spasms or West's Syndrome - the facts
• Where to next?

Kathryn tells us what happened...
We were visiting our health visitor when Jasmin had an attack. She took one look at Jasmin, picked her up and rushed out of the room, saying: 'She needs to see the doctor now - this isn't colic, she's having some kind of fit.'

I didn't know what to think. I just stood there in shock, feeling like someone had just slapped me in the face. Jasmin was quickly examined by the doctor who said the words 'infantile spasms' and immediately referred us to hospital for a full diagnosis. 

I was in floods of tears as I picked up Steve on the way to A&E, but at that stage I had little idea of what the doctor's words could mean for our beautiful girl. All I knew was that the urgent actions of the medical staff indicated this could be very serious, which filled Steve and me with panic.

We saw a stream of doctors, nurses and medical students over the next few hours at the John Radcliffe Hospital, and we were told that the spasms were a type of epileptic seizure. Finally, at about midnight, we were taken up to the children's ward where I was reunited with Jasmin. I stayed with her all night, watching over her, feeding her and comforting her. The night nurses would walk her around to calm her between feeds, allowing me to get some much-needed sleep. I was mentally and physically exhausted. 

The next day she was given a lumbar puncture to check her spinal fluid for signs of chemical abnormality, a CT scan to X-ray her brain, as well as an EEG to track the electrical activity in her brain. It was heartbreaking to see my small baby's head covered in electrodes, but I knew it had to be done to find out what was really wrong.

That afternoon the consultant took us into a private room with a senior registrar and the specialist epilepsy nurse. Steve says that he knew we were about to be given bad news, but I optimistically thought that we'd be told everything was going to be alright. 

What the consultant explained to us was difficult to take in - the EEG result was grossly abnormal and typical of infantile spasms. The prognosis was not good. The worst case scenario was that Jasmin's brain might not develop at all from now on. We were completely devastated - our daughter would probably be severely mentally disabled. I felt torn apart inside. All I could think was that she would never even understand we were her parents or how much she was loved. She hadn't even managed her first smile. 

Our first piece of good news - if you can call it that - came 48 hours later. They couldn't find a reason for the spasms, the tests for abnormalities from the CT scan and lumbar puncture came back negative. For most cases of infantile spasms there is a cause, for instance, the brain has not formed properly. For the small per cent where a cause isn't found, the prognosis is actually better. 

Jasmin was put on a relatively new anti-epilepsy drug called Vigabatrin and, against the odds, the fits stopped within days. I watched her every minute, looking for even the slightest twitch but she seemed to be fine. After a week we were told we could take her home. I was frightened and happy at the same time - hospital felt so secure and safe, and at home we would be totally responsible for ensuring that Jasmin had her medication. Then, just before we left hospital, another miracle, Jasmin smiled - a sign of development! It was exactly the kind of reassurance I needed.

We were informed that it could take two years to find out how well Jasmin was doing. We were also advised that it might be best for her to stay on the medication for that length of time to prevent any more fits that would affect her development, such as walking and talking. After a year, however, she was progressing so well that we were told she could come off the drugs. At first we were unsure - what if she started having fits again? But our fears have proved unfounded.

Now at 20 months, Jasmin can talk, has just started to walk and is developing normally. When she was first diagnosed we didn't know what her future held. Now we feel nothing can hold her back from achieving the same as every other little girl.

Help to raise money for the cause
Kathryn and Steve knew relatively little about infantile spasms when Jasmin was born, now they are very much aware of the illness... and that more money is needed for research and to improve the care for those who suffer from it. They also want to give something back for all amazing support they received from the hospital and others involved in helping Jasmin.

Starting on 23 June, Steve did a sponsored motorcycle ride around the coastline of Britain, covering 4,500 miles. And he managed to beat his personal record, by completing the ride in less than 10 days! 

babyworld supports Steve's attempt and we'd also like our members to be involved. Find out more about the motorcycle ride on www.bikearoundbritain.co.uk.

Infantile Spasms or West's Syndrome - the facts

• Infantile spasms is a very rare condition - about 150 children develop it each year in the UK.
• Infantile spasms should not be confused with febrile convulsions, or fits. Febrile convulsions affect children under five with very high fevers. They are not epilepsy, and do not lead on to epilepsy in later life. It is frightening for parents but is not, as a rule, dangerous. Your child will seem to be 'not with it', and his limbs will twitch or shake. This may go on for up to five minutes. If you think your child may have febrile convulsions, visit our child health section.
• Infantile spasms tend to first occur in babies aged three to eight months old, can happen numerous times each day and last for a few seconds each.
• Each spasm is an epileptic fit, when the baby's movements become uncontrolled and is caused by excessive electrical activity in the brain.
• There is no single cause for the excessive electrical activity - it may be due to abnormal brain development during pregnancy, lack of blood reaching the brain during labour or a neurological condition. In some children there seems to be no known cause.
• Treatment is with drugs such as Vigabatrin, steroids and Sodium Valporate and sometimes a high-fat, low-carbohydrate diet can help, too. Experts are currently considering surgery as an option.

Where to next?

• If you have any doubts about your baby's health or development, contact your health visitor or GP immediately.
• How can you tell if your child simply has colic?
• The West's Syndrome Support Group can offer encouragement and advice. www.wssg.org.uk.
• Want to talk about infantile spasms or does your baby have special needs? Join our discussion group