International Gastroschisis Awareness Day 2015 – like and share to show your support!

Gastroschisis  Awareness

Gastroschisis Awareness

Thursday July 30th is International Gastroschisis Awareness Day 2015.

Gastroschisis is a medical condition in which the baby has a hole at the front of the abdomen. Normally  just to the side of the umbilical cord which is attached to the womb. The hole has some of the bowel (intestine or guts) is coming out. This bowel is easily visible on the ultrasound scan.


This is a very rare problem, which occurs in around 1 in every 3000 births. At present there is no certain cause.

It would be really great if you could share this page to help us raise awareness of the condition.

Thanks very much in advance for your support


Tongue Tie – can you help my daughter with some advice please?


My tongue tied daughter

My tongue tied daughter

This was not the blog I was expecting to write this morning.

Last week I planned to write a quick blog asking your advice on how to help my daughter swallowing some pill prescribed by the Doctor. Difficulty swallowing is also called Oropharyngeal dysphagia! And we have covered it in a previous blog post.

But it was Saturday afternoon that we found out the reason.

We were travelling by train to my cousin’s husband’s 40th birthday party since you ask. Now all children of any age find a 90 minute rail journey somewhat on the boring side. So my son and my daughter and another of my cousins decided to have a tongue sticking out competition.


And that is when we discovered that our daughter was tongue tied. You can see from the photo above the extent to which she can stick out her tongue.

So what next?

That is the purpose of this post. Do you have any experience of know about tongue tie? My daughter is 13 so is interested in finding out what to do now (and so are my wife and I).

We see the Doctor in 10 days but any hints on what to expect would be gratefully received. It would be great if you could share in the comments section below.

Just as a point of information the UK’s NHS define “Tonguetie (ankyloglossia) “… “a problem affecting some babies with a tight piece of skin between the underside of their tongue and the floor of their mouth (lingual frenulum). It can sometimes affect the baby’s feeding, making it hard for them to attach properly to their mother’s breast.”

Parents of children with ADHD – can you help a student at Deakin University with some research?


ADHD Awareness

ADHD Awareness

We were contacted last week by Fiona Lynch of Deakin University who has us to help her find respondents for her research. So it would be great if you could give her a helping hand if you qualify.

Lynch writes “I am currently conducting a research project on hoarding behaviours in children and adolescents with and without ADHD that may interest you and some of your readers. I am currently seeking parents of 8-17 year olds with and without ADHD to take part in an important research project aimed at improving our understanding of the co-occurrence between ADHD and hoarding in children (e.g., clutter, difficulty discarding items, acquiring items). The project is examining the cognitive and familial factors associated with hoarding behaviours among children and adolescents. I am hoping if this project interests you, you may like to share it with your readers.

Parents can participate by completing a once-off online questionnaire about your child’s behaviours, taking approximately 20 minutes. If parents would like to take part in this exciting project, they can click the link below. Alternatively, they can contact the researchers directly to receive a mailed copy of the questionnaires or to discuss any questions they may have.

https://www.psychsurveys.org/hoardingchildren/hoardingchildren

This project forms part of my Doctor of Psychology (Clinical) at Deakin University and is conducted under the supervision of Prof Jane McGillivray, Dr Richard Moulding, and Dr Linda Byrne. This project has been approved by Deakin Human Research Ethics Committee (approval # 2013-225).”

You can contact Ms Lynch at flynch@deakin.edu.au


Concern as one in five children experience near-misses in open water – this is useful information for parents of children with autism


Open water near Jaipur

Open water near Jaipur

• New research released today by the Amateur Swimming Association (ASA) shows that a fifth of children have experienced trouble in open water, with 40% of parents saying it was a serious incident
• ASA launches the biggest ever open water safety initiative Swim Safe for the third year running today
• The ASA is urging parents to make sure their children are proficient in open water situations and not to rely on others to ensure their children’s immediate safety

The Amateur Swimming Association and RNLI are today launching a new campaign to educate parents on the dangers of open water swimming. Despite the RNLI warning that swimming in temperature below 15 degrees celsius can seriously affect your breathing and movement, 26 per cent do not believe cold water would affect their child’s swimming ability.

Furthermore, although most fatalities occur in open water or in the sea the research reveals that nearly half (43%) of parents wrongly believe that if their child can swim in a pool they will be safe in the sea. More worryingly, one in eight parents admit that they don’t always supervise their children when they are in the sea or open water, even though one in seven parents say their child cannot swim (needs floats, doesn’t take their feet off the floor or can’t swim at all).



The ASA and RNLI are urging parents to take more responsibility for their children in open water and concerned that the message of the added dangers and difficulties of beach swimming are misunderstood by both parents and kids.

The push is part of the ASA’s annual Swim Safe programme which is a joint initiative between the organisation and the RNLI which aims to give children aged 7-14 years old visiting the coast an opportunity to understand and learn about the differences between swimming in a pool and the challenges of swimming in an open water environment

Report On Stillbirth and Neonatal Death Rates – UK performs poorly says Professor Elizabeth Draper. The poor and people from minority ethnic groups at particular risk.


Calling 911

Calling 911

A UK research team finds regional variations even after allowing for factors such as poverty, mother’s age and ethnicity.

Sadly almost 1 in 150 babies born in the UK is stillborn or dies soon after birth. A research team led from the University of Leicester has identified large differences across the UK in the numbers and rates of babies who die, even after taking account of known factors that influence the rate of death such as poverty, mother’s age and ethnicity.

A new report by MBRRACE-UK, has looked behind these figures to try and identify how the situation might be improved. The team has collected data for the 3,286 stillbirths and 1,436 deaths in the first 4 weeks after birth (neonatal deaths) of babies born at 24 weeks of gestation or more resulting from the 781,929 births in the UK and Crown Dependencies in 2013.

Key findings include:-

Pregnancies to women living in areas with the highest levels of poverty in the UK are over 50% more likely to end in stillbirth or neonatal death.
Babies of Black or Black British and Asian or Asian British ethnicity had the highest risk death with rates of 9.8 and 8.8 per 1000 total births respectively.


Professor Elizabeth Draper, Professor of Perinatal and Paediatric Epidemiology at the University of Leicester said: “This report confirms that the UK performs poorly compared to other European countries of similar economic status particularly Sweden and Norway. We recommend that NHS organisations across the UK and the relevant Royal Colleges establish national aspirational targets for stillbirth, neonatal deaths and extended perinatal deaths. This will enable all services to be assessed against this benchmark in the future in order to work towards achieving similar rates to those of the current best performing countries in Europe.”

In identifying what actions should be taken, Professor David Field, Professor of Neonatal Medicine at the University of Leicester and Consultant Neonatologist at Leicester’s Hospitals, stated: “Those parts of the UK shown to have the highest number of baby deaths will need to carry out thorough reviews to try and identify factors that may account for their high rates particularly those that may be amenable to intervention in the short term.”