Sorrow and pity are natural responses to disability in children – but they are misplaced, researchers say.

There is no need to feel sad about youngsters with cerebral palsy because they experience life much as other children do – with all its joys and sadnesses, successes and failures.

Able-bodied adults tend to view such children in terms of the struggle they face and their lost potential for a full and active life. But that is not how the children see themselves, according to researchers from Newcastle University.

A study of 500 children with cerebral palsy in seven European countries has found that across a range of measures, including psychological wellbeing, self-perception and social support, their levels of satisfaction are as high as in other children.

Though disadvantaged, in some cases seriously, their impairment is incorporated into their sense of themselves from birth and they embrace life and all it has to offer with the same excitement as other children.

Professor Allan Colver of Newcastle University, who led the study, published in The Lancet, said it contained an important message for parents. “Parents can be upset when their child is diagnosed with cerebral palsy but they can now be reassured that most children with the condition who are capable of providing information at the age of eight to 12 have a similar quality of life to other children.”

In earlier research, he had shown that disabled children participated less in activities than other children, because of the restrictions imposed by their disability. But they were no less happy. The new study showed their quality of life, as reported by themselves, was no different. “A father came up to me after we reported the results and said, ‘You have already made me think differently about my child’,” Professor Colver said.

The findings reinforced the need for disabled children to be integrated into society, he added. “The change now needed concerns attitudes. Pity and sorrow should not be directed to disabled children because our findings indicate that they experience life as do non-disabled children. Maximum effort is needed to ensure their rights as citizens, rather than as disabled children, to participate in society as fully as other children.”

Julie Johnson of Gateshead whose 10-year-old son, Nathan, was diagnosed with cerebral palsy at four months, said: “I treat Nathan and his brother the same and I have found that both of them rise to their own challenges. Nathan has problems with his left hand but quite simple steps have enabled him to attend a mainstream school. He is an active, happy child.”

Nathan said: “I like all my teachers and I have a big group of friends at school. I have a special board which helps me to write neater. At playtime we play tag and football.”

Some of you may have seen this in the news over the past couple of days …

Amelia is thought to be the world’s first surviving sub-22 week micro preemie. She was delivered on October 24th 2006 by Caeserian section at an astonishing 21 weeks and six days, weighing just 260 grams and only slightly longer than a ball point pen (9.5 inches).

Some of you will know these pictures all too well if you’ve ever had to experience the delights of the NICU rollercoaster. Our twins were extremely premature at 26 weeks and survived, but 22 weeks is phenomenal. From all accounts, she’s a little fighter and has now gone home after 4 months in NICU. Absolutlely amazing, and I am so happy for the parents that their first major hurdle has now come to an end. It will almost definitely be the first of many hurdles having been born this early, but only time will tell.

Those tiny little feet are hard to imagine, but this is what a micro preemie looks like. The redness is due to the fact that they only have one layer of skin (instead of seven), and it’s like tissue paper.

To put it into context, these are the survival rates for extremely premature babies:

Babies born at 25 weeks have a 50% chance of survival
Babies born at 24 weeks have a 39% chance of survival
Babies born at 23 weeks have a 17% chance of survival
Babies born at 22 weeks have only a 2% chance of survival …

This latest story has, however, raised even more controversy over the debates surrounding the upper limit for abortions. And then there are the significant issues that can unfortunately come with extreme prematurity (this blog being the subject of one of them). But I don’t want to get into all of that in this post.

This post is to celebrate something amazing … and I really hope that Amelia goes from strength to strength. To beat survival odds of 2%, she deserves everything that life can give …

The kids have had a bad run the past couple of weeks with yet more chest infections and colds. The problem is always amplified by their chronic lung disease from being intubated for so long in NICU. A new born baby is defined as having chronic lung disease if they have been oxygen dependent on a ventilator for at least 28 days from birth.

When infection gets into Max and Ella’s lungs, it hits them for six, and they cough for England. In the past they’ve needed additional help with extra O2 when having a coughing fit, but they are getting stronger and stronger at being able to fight it on their own now. We’re just grateful that we finally got the go ahead last November for their Synagis shots (palivizumab) to protect against Respiratory Syncytial Virus (RSV).

RSV usually causes mild cold-like symptoms in adults and children. But it can make premature babies and children with certain other medical conditions very sick. In England, 28 per 1000 hospital admissions in children aged under 1 year are attributed to RSV each year, and in the US, about 125,000 infants are hospitalised with severe RSV infections. It is the leading cause of infant hospitalisation and is a significant problem for high-risk babies and children.

Full term babies get antibodies from their mothers during pregnancy, and these help to fight RSV and other viruses. But babies born prematurely often do not get enough antibodies before birth. Each dose of the Synagis vaccine gives them enough RSV-specific antibodies to help fight RSV infection for about 30 days, but at £4,000 a course, it’s not cheap! Doctors have to get special sanction from the Primary Care Trust Board to give the go ahead on every baby that needs it. Madness!

Anyway, their vaccinations seem to be working at the moment as they’ve not had anything more than the colds/chest infections (touch wood).

Sleep has obviously been a problem, and it has been a big struggle helping them to settle at night. Ella has usually been the one to have problems with sleeping, but for a few weeks now, she has been taking Vallergan (an anti-histamine with sedative properties). Seems to do be doing the trick at the moment …

Think I may try some tonight!

Okay, I’ve been slack! Motivation hit an all time low and I apologise for not updating for so long.

I hadn’t realised this blog had gained as many readers as it has in such a short space of time. To be honest, I didn’t know what to expect when I first started this blog – so thank you for the many kind emails I have received from readers of the blog.

November saw our little miracles reaching their first birthday! It’s whizzed by and seems so long ago now that they were stuck in NICU fighting for their lives. It’s not until you look at the pictures to see how much they’ve changed in such a short space of time that you realise how far they’ve come. We had a quiet family affair and as you can imagine, the house was transformed into a Toys ‘R Us showroom!!!

December was a massive upheaval for us as we moved into our new home; no small task! But it’s great to finally be settled again having spent a few months waiting for the whole process to move along.

The kids have settled in nicely, and most importantly, we seem to have moved past the nightmare couple of months in October/November. Ella has had a total transformation. She has blossomed into bright and happy little bundle of joy! Now that her reflux and constipation issues are more under control, her personality is really coming out, and it’s such a relief to see her enjoying life now without all of the pain and discomfort she was clearly in toward the back end of last year. She smiles all the time (well not all the time!), she laughs, she listens more and more now that her hearing is recovering, and it’s like she has suddenly woken up to everything around her.

Her tone is much better, and the Occupational Therapy (OT), Physiotherapy (PT) and Conductive Learning (CL) she has received over the last few months have brought her on leaps and bounds. She shows such a drive in wanting to overcome her limitations that we’re astounded. I’ll do some retrospective updating in the next few posts to talk about it all in more depth.

So Happy New Year once again … onwards and upwards!

However, this post is about the nightmare Ella has had over the past 3 and a half weeks. When she fell ill, we were concerned about her breathing as she only recently came off the oxygen support required for the chronic lung disease.

So we took her to the GP’s and she was diagnosed with a throat infection. A weeks worth of Penicillin had no result and everything remained the same.

On the day that Max went to GOS, Ella had one of the worst days yet. She was crying and screaming inconsolably for most of the day, and when I got home, my mother-in-law was trying to sort out the cannulae to get her back on the O2.

The entire night was hideous. Ella doesn’t sleep well at the best of times, but this was something else. The next day I took her to A&E for assessment.

I thought, “As soon as we arrive, they’ll see exactly how much distress she’s in”. Guess what, the little monkey decided that as soon as we arrived in A&E, she would be all sweetness and smiles! Unbelievable.

Anyway, having sat there for 2 hours before seeing a nurse, I then had to wait another couple of hours to see a medical student, and then finally a registrar!

[Quick rant: what annoys me most is that we have to recount her history every single time we go to A&E. I'd be there all day if I had to do that; why not go and fetch that big fat library of files you have on her from the 5 month stay in NICU?!]

So, having reviewed her, it was decided that her throat infection must be viral as the antibiotics hadn’t worked (that old chestnut!). In fairness, it was the most likely reason. So we took her home and continued to give Calpol for pain relief.

Nothing changed.

Back to A&E, through the same old routine, and this time she got to see one of the consultants. After an extensive neurological and general checkup (including x-rays), it was decided that it must be her acid reflux. Another two or three days passed and we didn’t see any changes.

We then got a call to go back for a review with a radiologist consultant.

To cut a long story short, he had noticed some abnormal gaseous patterns in her bowel. They wanted to rule out a diaphragm perforation, but it turned out that she had a faecal impaction (hard poo blocking the bowel). Constipation is quite common with CP because the guts are usually more sluggish.

After several visits, we finally started to get to the bottom of it (excuse the pun). You have to persist with the health professionals. It can be a long slog to find out what’s going on, but you mustn’t be deterred.

Finally, Ella is starting to settle a bit now having been on Movicol for the impaction and continuing the Lactulose for daily regulation.