3P25 Deletion Syndrome.

3P25 Deletion Syndrome. - Today we welcomed back a two year old little girl for her second
assessment. She has an exceptionally rare genetic disorder known as 3p25 deletion syndrome. This is so rare that since the first person was reported in the medical literature in 1978, only around 50 people with a 3p25 deletion involving no other chromosome(s) have been described in the medical literature. Today after 10 months on the Snowdrop programme she had made some very significant developmental gains. Her visual ability has moved from the 4 month level to the 12 month level. Her auditory development has moved from the 8 month level to the 18 month level. Gross motor skills have improved from not even sitting, to standing against furniture, - she is well on the way to developing a standing balance. Language has moved from the 7 month level of babbling, to the 14 month level of possessing two words of speech, - 'dada' and 'go.' Socialisation has moved from the 8 month level to the 18 month level. It just shows that genetic expression can be fought against. Well done to mum and dad who have brought about this dramatic change!

Premature Birth, - Brain Haemorrhage, - Ventriculitis, - Meningitis.

Today we welcomed a two and a half year old little boy back for his 5th assessment. He had been born 12 weeks early with fluid on the brain, a brain bleed on both sides, ventriculitis, and he contracted ecoli bacterial meningitis at 8 days old. He nearly died, he was having bad seizures, so much that his body was jerking off the bed and his mum and dad were told there would be long term effects of this meningitis as he was so sick. Unfortunately he got meningitis another TWO times. He had an MRI which showed brain damage and unfortunately he had to have a shunt fitted as the third bout of meningitis finally cleared up. The hydrocephalus was very severe and neurosurgeon mentioned more brain damage. As you may imagine, the prognosis for someone who has been through that level of neurological trauma is not good. So today was a joyous day because after 2 years on the programme we were able to discharge him as completely well! He now has the developmental profile which someone of his age who is uninjured would have and he is hitting all his milestones. He is indistinguishable from his twin brother. Well done to mum and dad, you rescued him!

1P36 Deletion Syndrome.

1p36 Deletion Syndrome according to Genetics Home Reference is a disorder that typically causes severe intellectual disability. Most affected individuals do not speak, or speak only a few words. They may have temper tantrums, bite themselves, or exhibit other behavior problems. Most have structural abnormalities of the brain, and seizures occur in more than half of individuals with this disorder. Affected individuals usually have weak muscle tone (hypotonia) and swallowing difficulties (dysphagia).

People with 1p36 deletion syndrome have a small head that is also unusually short and wide in proportion to its size (microbrachycephaly). Affected individuals also have distinctive facial features including deep-set eyes with straight eyebrows; a sunken appearance of the middle of the face (midface hypoplasia); a broad, flat nose; a long area between the nose and mouth (philtrum); a pointed chin; and ears that are low-set, rotated backwards, and abnormally shaped.

People with 1p36 deletion syndrome may have vision or hearing problems. Some have abnormalities of the skeleton, heart, gastrointestinal system, kidneys, or genitalia.

 We were very pleased to welcome a two and a half year old little boy back today for his second assessment. He has 1p36 Deletion Syndrome and when we first saw him, he posted some pretty low scores developmentally, but it was obvious that the potential for improvement was there! So he has been on the Snowdrop programme for 7 months and at his assessment today, his visual development had moved upwards from the 8 month level to the 14 month level. His auditory development was up from the 7 month level to the 14 month level. In gross motor development he is working towards developing a standing balance and he is well on his way to it! In terms of language he has moved from the 6 month level to the 14 month level and I heard him say two words today, 'more,' and 'go.' Hand function is also improving with his right hand now operating at the 15 month level and social development which was at the 6 month level is also now at the 15 month level. He is so much more engaged with his environment and all this improvement has been gained against the backdrop of a genetic expression which is trying to drag him down. Absolutely stunning reassessment, well done to mum and dad!  If you require any information about Snowdrop, simply email info@snowdrop.cc

Infantile Spasms.

It never occurred to me, up until it was pointed out today that I don't include updates for our children on the distance programme. So here goes one. Over the past few days I have completed the third distance reassessment on a 22 month old little girl who suffered infantile spasms. When we first started the Snowdrop programme she was 11 months old and already age appropriate in visual development, but did have a strabismus and poor magnocellular processing. She is now just above age level with an improving strabismus and normal magnocellular processing. Auditory development was just below age level and now it is just above age level. In terms of gross motor skills, she is now showing signs that she is ready for us to start developing a standing balance and her language is now at the level where she is producing 'scribble talk' and beginning to try a few words. Fine motor development which was at the 4 month level is now touching the 15 month level and it was great seeing her trying to build with blocks and feed herself with a spoon. Social development is not far from age appropriate levels. She has made some nice progress in the last year. Well done!  

If your little one has experienced infantile spasms, which have affected their development and want more information, contact us on info@snowdrop.cc

HIE Grade 3.

Perinatal asphyxia, more appropriately known as hypoxic-ischemic encephalopathy (HIE), is characterised by clinical and laboratory evidence of acute or subacute brain injury due to asphyxia. The primary causes of this condition are systemic hypoxemia and/or reduced cerebral blood flow (CBF).  At Snowdrop we see many children who have suffered HIE.  It is graded in rank of severity, grade 3 being the most severe.

Today we welcomed back a 23 month old little girl for her 5th assessment. She had suffered an HIE grade 3, which is severe and I first saw her when she was just 6 weeks old. Since that time, she has come along wonderfully and it was great to see her walk into Snowdrop today for the first time. She is now well ahead of her age level in visual cognition and auditory cognition, (30 months and 40 months respectively), her language is age appropriate in that she is now putting two words together in what is known as 'telegraphic speech' and her social development is also age appropriate. The only problems which remain are use of the left hand, which is coming along nicely and refinement of her walking, which as she has only been walking for a few weeks, may come naturally and will in any case continue to improve as we improve tactile performance in the left side limbs. Well done folks, I don't need to see you for a year! (we will keep in touch though in the meantime).

If you need to contact Snowdrop, you can do so at info@snowdrop.cc

Down's Syndrome

Down syndrome is a chromosomal disorder caused when an error in cell division results in an extra 21st chromosome.There can be impairments in cognitive ability and physical growth, mild to moderate developmental disabilities, and a higher risk of some health problems.

Through a series of screenings and tests, Down syndrome can be detected before or after birth.

The likelihood having Down syndrome is around 1 in every 700 pregnancies. It is determined by many factors, but research suggests there is a higher risk if the mother delivers at over 35 years of age.

Before the age of 30 years, fewer that 1 in 1000 pregnancies will be affected by Down syndrome. After the age of 40 years, this figure rises to about 12 in 1,000.

Snowdrop has experienced some really good results in treating the developmental problems produced by Down's syndrome and this article is a good example of that. http://www.madeformums.com.baby/downs-syndrome-mums-story/42812.html

This morning we welcomed another little boy of 2.5 years, with Down's syndrome for his first assessment. It turns out he is a very good judge of character as he would not have anything to do with me! I had to work through his mum, but we got there in the end. We are hoping for similar results to the little girl in the article.

3P25 Deletion Syndrome.

3P25 syndrome is a very rare genetic disorder affecting something like 1 in 500,000 live births and the problems it can cause for the child can vary widely, creating a spectrum.  Therefore each person with a 3p25 deletion is unique and will have different developmental and medical concerns. No one person will have all of the features listed her – even if their chromosome deletion appears to be exactly the same. However, a number of common features have emerged:

• Low birth weight, most children also grow slowly and remain short. 
• Feeding problems
• Delay in reaching baby ‘milestones’ and later developmental delay 
• Hypotonia - floppiness 
• Need for support with learning 
• Ptosis – an inability to fully raise the upper eyelid 
• Unusual facial features, such as wide-spaced eyes, low set ears, and a long groove between the nose and upper lip 
• Small head (microcephaly)
• The head is sometimes an unusual shape 
• Autism and challenging behaviour 
• Many children have a cleft palate or other palate anomalies 
• Extra fingers and/ or toes 
• Dimple near the base of the spine 
• Bowel or intestinal problems 
• Seizures 
• Hearing impairment, temporary in some children 
• Kidney problems 
• Heart conditions 
• Pits/ tiny holes in the cheek just in front of the ears 
• Scoliosis or other mild skeletal problems 

This afternoon a new family with an absolutely beautiful 14 month old little girl joined us on the Snowdrop programme. She has 3p25 deletion syndrome, but mum and dad have already worked so hard with her and done really well. Let's hope we can add even more to their achievements. She is such a cutie!

Neonatal Alloimmune Thrombocytopenia

 Neonatal Alloimmune Thrombocytopenia is a disease that affects babies in which the platelet count is decreased Platelet antigens are inherited from both mother and father. NAIT is caused by antibodies specific for platelet antigens inherited from the father but which are absent in the mother.  Fetomaternal transfusions (or fetomaternal hemorrhage) results in the recognition of these antigens by the mother's immune system as non-self, with the subsequent generation of allo-reactive antibodies which cross the placenta. NAIT, hence, is caused by transplacental passage of maternal platelet-specific alloantibody and rarely human leukocyte antigenn (HLA) allo-antibodies (which are expressed by platelets) to fetuses whose platelets express the corresponding antigens. NAIT occurs in somewhere between 1/800 and 1/5000 live births. More recent studies of NAIT seem to indicate that it occurs in around 1/600 live births in the Caucasian population.

 Today we met a 5 year old little boy and his parents for their initial assessment for the Snowdrop programme. The little one had suffered brain injury through neonatal alloimmune thrombocytopenia, which had caused cerebral bleeding and hydrocephalus. His visual abilities are almost completely absent, but he does understand some language, (but only produces a few words). He experiences tactile hypersensitivity and is constantly producing self-stimulatory vestibular behaviours. His left side limbs are very weak and his left hand is hardly used. Looking forward to getting him started and seeing what we can achieve

Cockayne Syndrome.

According to Genetics Home Reference, Cockayne syndrome is a rare disorder characterized by an abnormally small head size (microcephaly), a failure to gain weight and grow at the expected rate (failure to thrive) leading to very short stature, and delayed development. The signs and symptoms of this condition are usually apparent from infancy, and they worsen over time. Most affected individuals have an increased sensitivity to sunlight (photosensitivity), and in some cases even a small amount of sun exposure can cause a sunburn or blistering of the skin. Other signs and symptoms often include hearing loss, vision loss, severe tooth decay, bone abnormalities, hands and feet that are cold all the time, and changes in the brain that can be seen on brain scans.

People with Cockayne syndrome have a serious reaction to an antibiotic medication called metronidazole. If affected individuals take this medication, it can cause life-threatening liver failure.

Cockayne syndrome is sometimes divided into types I, II, and III based on the severity and age of onset of symptoms. However, the differences between the types are not always clear-cut, and some researchers believe the signs and symptoms reflect a spectrum instead of distinct types. Cockayne syndrome type II is also known as cerebro-oculo-facio-skeletal (COFS) syndrome, and while some researchers consider it to be a separate but similar condition, others classify it as part of the Cockayne syndrome disease spectrum.  It is estimated to occur in 2 to 3 per million newborns in the United States and Europe.

Today we welcomed a 5 year old little girl who has Cockayne syndrome onto the Snowdrop programme.  Such a poor little princess who could only just see me at close range and who had very little motor abilities.  However, there is always hope and all we can do is to work methodically on the problems she displays.  The brain is incredible and I have seen the wonders it can perform, even in some of the most severe cases.  Let's see if we can't improve things for this little one.

sometimes. Let's see if we can't improve things for this little one. 

Autism, Sensory processing and Social Communication.

One of the defining attributes of what the world likes to call 'autism' is problems with sensory processing.  I have yet to meet a youngster with autism who does not have some sort of sensory processing issue, be it visual, auditory, tactile, etc, or indeed all the senses.  This is so important because it is these sensory input channels to the brain which dictate the way in which we see, hear and feel the world around us.  This in turn then influence what a child produces by way of the output pathways of gross and fine motor behaviour, vestibular behaviour, fine motor function, language, social communication and emotional behaviour. 

Today we welcomed a four year old little boy and his family from eastern Europe for their first assessment. The little on has a diagnosis of autism, but his major problems lie in the areas of sensory processing and social communication. Of course these two areas are linked.  Because he experiences auditory hypersensitivity, he doesn't like to interact with people he doesn't know, in particular with children.  Children are unpredictable and produce many sounds at the frequencies to which he is sensitive.  His visual magnocellular pathway is under-active, (this pathway helps us to notice movement and aids with visual accommodation) which is why he is focussed on objects which move, in particular objects which spin, (he is unwittingly trying to activate that pathway by creating more and more movement).  Some children with problems here will sit and wave their hands in front of their eyes in an attempt to stimulate this pathway.  This is also why he holds objects close to his eyes in order to observe them.  He spins himself around and spends time upside down in a clear attempt to stimulate the vestibular pathways, which he needs because his balance is very poor, (his brain innately understands this, hence the self - stimulation. - The brain shows us what it needs, we just need to observe)!

He was a delightful little chap who has lots of possibilities. Our first steps, as always are to try to improve sensory processing, because as I say, if the input channels which feed information into the brain are not working correctly, then neither will the output channels because they are operating on faulty information. Let's see how he fares on the Snowdrop programme.

IDIC-15, Chromosome 15q, - DUP 15q syndrome.

Isodicentric chromosome 15 syndrome is a developmental disorder with a broad spectrum of features. The signs and symptoms vary among affected individuals.

Poor muscle tone is commonly seen in individuals with isodicentric chromosome 15 syndrome and contributes to delayed development and impairment of motor skills, including sitting and walking.

Babies with isodicentric chromosome 15 syndrome often have trouble feeding due to weak facial muscles that impair sucking and swallowing; many also have backflow of acidic stomach contents into the esophagus (gastroesophageal reflux). These feeding problems may make it difficult for them to gain weight.

Intellectual disability in isodicentric chromosome 15 syndrome can range from mild to profound. Speech is usually delayed and often remains absent or impaired. Behavioral difficulties often associated with isodicentric chromosome 15 syndrome include hyperactivity, anxiety, and frustration leading to tantrums. Other behaviors resemble features of autistic spectrum disorders, such as repeating the words of others (echolalia), difficulty with changes in routine, and problems with social interaction.

About two-thirds of people with isodicentric chromosome 15 syndrome have seizures. In more than half of affected individuals, the seizures begin in the first year of life.

About 40 percent of individuals with isodicentric chromosome 15 syndrome are born with eyes that do not look in the same direction (strabismus). Hearing loss in childhood is common and is usually caused by fluid buildup in the middle ear. This hearing loss is often temporary. However, if left untreated during early childhood, the hearing loss can interfere with language development and worsen the speech problems associated with this disorder.

Today's family travelled from central Europe to see us with their beautiful 15 month old little girl. She has IDIC-15 which occurs in around 1 in 30,000 births. This was her second assessment, the first one having been a distance assessment, so she has been doing the Snowdrop programme for 6 months. Despite the genetic disorder trying to slow down development, she had made many gains, in visual development, where she is now looking at pictures in a book, auditory development where she is now understanding a few words. In gross motor development she is on the verge of crawling and she is actually moving herself forward. We also see improved hand function and socialisation. Well done to a mum and dad who travelled such a long way and who have worked so hard to fight a genetic condition which is working to stop development. To make gains despite this is truly remarkable.

Cerebral Palsy / Developmental Delay.

I often wonder about the term 'cerebral palsy.'  What does it mean?  There are various types of this condition, spastic cerebral palsy, athetoid cerebral palsy, dystonic cerebral palsy, ataxic cerebral palsy, dyskinetic cerebral palsy and mixed cerebral palsy.  All of these are associated with a varying spectrum and degree of developmental delay, in various, or all areas of development.  CP is a description of symptoms, - symptoms which can be so wide ranging and of differing degrees of severity as to make the term virtually meaningless.  Some children with CP can also have elements of what is known as ADHD, Autism and other conditions too.  It is as though when a child suffers a 'neurological incident' he / she places their hand into a bag of symptoms and scatters them onto a table.  Some fall into the circle marked 'CP,' others fall into the circles marked 'autism' or ADHD.  These disgnoses can be 'fuzzy concepts where the boundary of one condition crosses over into the territory of the next, and so it was with the visit of today's little one to Snowdrop.

Today we welcomed back a 3 year old little boy for his fourth assessment. He has a mixed diagnosis, some saying CP and others developmental delay, - essentially it amounts to the same thing. He was a bright button from the start, but now at 3 years old he is performing cognitively at the 5 - 6 year level. His previous tactile undersensitivity has gone and in the 18 months he has been on programme, his language development has jumped from the 16 month level to the 48 month level. The most difficult area for him has always been gross motor development, but he is now taking pleasing steps forward and he is now quadruped crawling. He dressed up specially for us today, wearing a bow-tie, - he looked really cool. I just wish I had his hair, - don't ever dare cut it! Well done to mum and dad, you have worked wonders.

By the time they settle on this one's diagnosis, he'll be fine!

Neonatal Arterial Stroke.

Many people associate strokes with age, but they might be surprised to learn that a great many young children suffer strokes.  Stroke happens in about 1 in 4,000 live births. The risk of stroke from birth through age 18 is almost 11 in 100,000 children per year.  So it is a great deal more common than one might imagine.

Today we met a nearly 3 year old little girl who has developmental delays due to a neonatal arterial stroke. She was absolutely delightful, just starting to walk and talk, mum and dad, as with all mums and dads have already performed wonders with her. Can't wait to get her started on the Snowdrop programme.

We have a few children on our programme who have suffered varying types of stroke and most of them are making good progress.  Let's hope this little girl follows in their footsteps.

Cerebral Infarction, Leukomalacia and HIE

Today we welcomed a nearly 3 year old little girl and her family back to Snowdrop for her fourth assessment. She had suffered a cerebral infarction, leukomalacia and HIE, but she also has retinal dysplasia which curtails visual ability markedly. For those of you who are unfamiliar with these terms, please allow me to explain.

(1). Cerebral Infarction. - This refers to a loss of brain tissue in an area, caused by lack of oxygen.

(2).  Leukomalacia. - This is loss of white matter, (the myelin sheath which surrounds axons and enables the electro-chemical signal created in the neuron to travel at great speed).

(3). Hypoxic Ishaemic Encephalopathy, (HIE) is a type of brain damage that occurs when an infant's brain doesn't receive enough oxygen and blood. So really it is another way of framing an infarction.

Even though she has retinal dyslpasia, she made eye contact, pulled my glasses off, (a favourite pastime of children) and I noticed her follow my wife, who was a short distance away. Auditory cognition is now above age level with her previous sound sensitivity having been resolved. Her tactile processing issues also seem to be resolved and socially she is an absolute delight, performing at near age level. Such a friendly, playful little twee, it is so nice to see her making progress.

1p36 Deletion Syndrome

1p36 deletion syndrome affects between 1 in 5,000 to 1 in 10,000 children.  It is characterised by severe intellectual impairment, lack of language development, temper tantrums and other behavioural issues.  There can be structural abnormalities in the brain which also cause low muscle tone and difficulties in swallowing. Children can take a long time in rolling over, sitting, etc The only treatments which have been widely used are physiotherapy and music therapy, which have had limited impact.  

6 months ago I was delighted to welcome a 12 month old little girl with 1p36 deletion onto the Snowdrop programme where we try to harness the inherent plasticity of the brain in order to stimulate development.  Today the little girl in question attended with her parents for her first reassessment.  we saw some promising improvements. She is now rolling and sitting, her visual performance was improved and she is now listening to the voices around her, which gives her a chance to begin decoding language. She also now recognises her own name. Hand function is also showing good improvement with the development of a pincer grip and we also have gains in social development.  As I say, children with this disorder usually have feeding and drinking problems due to their difficulties with swallowing, but we seem to have had a positive effect here with this little one eating and drinking with impunity.

All this in the face of a genetic expression which is acting to prevent development. If we can do this in 6 months of programme, imagine what we can achieve in the long term!

Meningitis and Hydrocephalus.

Today's assessment was on of the most amazing we have hosted.  It was with a 20 month old little boy and his family. He has been on the programme for 16 months and this was his fourth assessment. 

His background is a complex one.  In his Mum's own words in her first email to me.

"My identical twin boys were born 8/3/2016, 12 weeks early. ------ had fluid on the brain, a brain bleed on both sides, ventriculitis, and both twins contracted ecoli bacterial meningitis at 8 days old. ------- nearly died, he was having bad seizures, so much that his body was jerking off the bed (------- wasn't as sick) we were told there would be long term effects of this meningitis as he was so sick.

Unfortunately ------ got meningitis another TWO times. He's had an MRI which showed extensive brain damage and unfortunately has had to have a shunt fitted this week as the third bout of meningitis finally cleared up and he was well enough for surgery. The hydrocephalus has been very severe and neurosurgeon mentioned more brain damage since the last MRI.

I got talking to a mum of a little baby called ------- from York last night, we are at Leeds hospital together. She mentioned Snowdrop and I've been reading your website.
------- still not been discharged from hospital and yesterday started twitching down one side of his body again which he always did everytime he had meningitis, but part of me wonders if it's cerebral palsy or from the brain damage. We are waiting for neurology to come review him. But the hospital aren't being very open about his brain damage as I understand they can't say how it's going to effect him, but there is something clearly wrong. We don't even know if he can see or hear. He just states vacantly. The hospital describe him as a very angry as unsettled baby, he settled yesterday when I put his twin in his cot with him and actually looked directly at him.

We don't think we would be able to get to Devon having twins and a four year old. But we are very interested in the snowdrop programme for ------. I just wondered if you could advise me as to what to do next?

I know ------- is a very complex case but that's the basics of his history in his short 13 week life so far!"
In short, he was in a sorry state with a prognosis which was savage, the little one was going nowhere. Today, after 16 months on the programme, he walked into the assessment room and is at age level in every area of development. In fact today I graduated him from the programme, - he no longer really needs it! Of course we will keep a 'monitoring eye' on his progress, just in case an issue raises it's head, but I'm sure it won't. Not a bad start to the week! Well done to mum, dad, big sister and twin brother, - together we rescued him!

Learning with Music Helps Boost Changes in Brain Structure.

I have understood the importance of music for some time now, how it can influence the plasticity of the brain and how in particular it can influence the development of spoken language.  This is why there is a musical element to all Snowdrop Programmes, whether that be through offering clients access to the 'EASE' programme, the 'Listening Programme,' or whether it is using music to calm a child.  Now we have evidence that we can use music to stimulate better motor performance.  This will be immediately implemented and incorporated into our programmes.  With thanks to domain-b.com.  Learning with Music Helps Boost Changes in Brain Structure 

Successfully Treating Down Syndrome

This article was written by a Mum who has a little girl with Down Syndrome who used to be on the Snowdrop Programme.  I first saw Eloise when she was 3 months old and she was already showing signs of having severe issues.  However, we got to work on trying to stimulate development, on trying to change the way in which her brain worked and we were successful.  Eloise is now 5 years old and she is just like any other 5 year old child, hitting all her milestones and looking forward to a bright future.  With thanks from 'Made For Mums.' Continue reading here - http://www.madeformums.com/baby/downs-syndrome-mums-story/42818.html

Treatment of PACS1 Syndrome.

Today we welcomed back a 7 year old little boy for his 8th assessment. He has a rare genetic condition called 'PACS1 Syndrome.  This is a very rare genetic condition caused by mutation of the PACS1 gene. It is NOT inherited from either parent but it will be passed on to a patient’s child (“autosomal dominant”).

The first two cases were identified in early 2011 by doctors in the Netherlands. As of early 2017, there are just 40 cases that have been identified worldwide.

PACS1 children have the following issues.

• most of our children have similar facial features such as similar facial features.
• Widely spaced eyes and low-set ears
• Down-slanting eye corners and mild uni-brow
• Highly arched eyebrows and long eyelashes
• Round “button” nose with a flat arch
• Wide mouth with down-turned corners
• Thin upper lip and widely spaced teeth

Other common traits the parents have seen:

• Low muscle tone
• Seizures (usually short and sporadic)
• Repetitive stimulation (similar to Autism Spectrum Disorders
• Sensory over/under sensitivity 
• Motor planning difficulties 
• Delayed physical and cognitive development
• Chewing and swallowing diffculties
• Digestion and/or bowel problem
• Slower growth resulting in lower height and weight

However despite these problems he has made so much progress since we first started him on the Snowdrop programme in October 2013. Back then he was behind in visual cognition, now his reading is surging ahead and he is fully cognisant. He was also behind in auditory cognition but now understands language at age level. His tactile and gross motor skills have improved immensely and he is roughly where he should be in terms of gross motor skills. The most dramatic improvement however is in language production. for so long he was quiet and seemed withdrawn and at his first assessment only having the verbal abilities of an 18 month old. Today we couldn't keep him quiet and he produces a wide vocabulary and perfect grammatical structure. He has an impish sense of humour and he will continue to improve. His future is considerably brighter than when I first met him, but you can see the timeframe with which we have brought about this change? Yesterday it was 5 years, today it is 4 years, so all of you out there, stick with it! Well done to mum, dad and sister, who have 'swam against the genetic current' and are most certainly winning!

Reducing Baby Brain Injuries.

A very interesting report from the BBC this morning concerning the rates of brain injuries sustained by babies in the UK during labour.  This report really resonated with me because 30 years ago my own son was born with severe brain injuries partly due to a foetal heart trace showing severe distress, not being monitored correctly and therefore not acted upon.

As I say, my son's birth was 30 years ago and I was aware of other families at the time who's children suffered similarly.  Although there was a great deal of publicity at the time surrounding my son's injuries and we knew from the lawyers who successfully sued the North Staffordshire Health Authority on our behalf that the medical and nursing professions were aware of these problems nationwide, it seems that it has taken until now, with God only knows how many children's lives decimated, for someone to do something about it!

As readers of this blog will know, I run Snowdrop for Brain Injured Children, - a child development agency who provides programmes of developmental stimulation for brain injured children.  We have been operating now for 10 years and during that time I have heard story after story from families who say that their baby's heart monitor was either ignored, or not interpreted correctly.  This amounts to hundreds of children that I can account for where parents have legitimate questions to ask in this area.

According to the BBC's report, the major issues are "problems with accurate assessment of foetal wellbeing during labour and consistent issues with staff understanding and processing of complex situations, including interpreting baby heart-rate patterns (on traces from CTG machines)"

This is a shocking situation in it's own right, but the fact that I can account for this situation being prevalent for the past 30 years makes it even more disturbing.  Children's lives are being decimated and therefore so are the lives of their parents and wider family.  Let's hope that this report brings an end to the situation, - but I very much doubt it!