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

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!

The Importance of Tummy Time.

When you consider the size of a newborn’s head compared to the rest of his tiny body and add the fact that for many months after birth his muscle strength is low, you can see why spending time on his tummy can be frustrating.  This is even more so for our babies who have developmental disabilities which bring additional problems with regard to muscle tone, coordination and sometimes hydrocephalus.

Nowadays we also have a fear of Sudden Infant Death Syndrome, which quite rightly keeps babies on their backs for a huge amount of time.  However, this does have developmental drawbacks because in terms of mobility development, when a baby is on his back, he is upside down. 

Tummy time: strength, head shape, and smarts

Placing a baby on his tummy not only gives his neck muscles a workout, it strengthens the torso and provides him with more reaching and looking practice. That’s a big boost for development; in fact, researchers have seen that more tummy time correlates to better motor skills in babies. Not only that, but, amazingly, encouraging motor skills is also known to help babies with social development, since the stimulation to motor pathways in the brain seems to encourage growth in other regions as well.  In other words, tummy time isn’t just a physical workout — it’s a boost to other areas of development too.

Seeing the world belly-down and head up also makes it easier for your baby to correlate the sounds in his surroundings with their exact location (rather than being stuck looking at the ceiling or seeing things upside-down all the time). That’s also why carrying your baby is good for the brain because it does not block his ability to turn and locate sounds as say a car seat would.

When and how much?

Most authorities agree that around two to four weeks after birth is a good window to start tummy time. Remember, at this point your baby and his large cranium are fighting an uphill gravity battle, so don’t be surprised if you don’t get far with the exercise, especially if your little one has developmental problems. Try once a day to start, and if it helps, (and if he is small enough),  place baby on your stomach (this counts) and talk to him whilst he does what could be all of a 30-second workout.  

From there, tummy time will grow in length. Recommendations range from trying for 30 minutes a day or several stints of five to 10 minutes, to a looser goal of whenever possible. But many babies don’t enjoy the exercise until they get stronger (around four months of age). Within a month or two after that, the belly becomes one of their favorite positions because it allows them to see, reach, and play more easily.  All of this will take longer with a child with say cerebral palsy because of the aforementioned difficulties which are also working against them, but keep trying, - start small and second by second work the time so that he is spending longer and longer on his tummy.

Tummy time how-to

If your baby is just starting out, you can roll up a receiving blanket and put it high on his chest, under the armpits, but don't place him so high that it restricts his movement.  Instead of plopping your baby down directly on his tummy (where he’s not used to being), start by lying him on the floor on his back. Look at him, give him a smile, and make contact first. Tell him something like: “I’m going to help you roll to your belly, okay?” (With repetition, he’ll know what’s about to happen) and roll him from the hips gently. If his arm gets stuck underneath him, lift up the hip on the same side of his body to allow him to pull his arm out. The idea is to let your baby participate in getting into the position so he’s practicing the movements and feeling more in control, instead of having you simply stick him there.

Once your baby is on his belly, get down on the floor in front of him to talk.

Put one or two toys within reaching distance or a mirror close up so he can see himself.

Once your baby can lift his head enough to see in front of him, one of his favorite things to look at might be a book of faces. Get an accordion-style baby faces book with clear, large photographs.

Use a comfortable but flat mat without too much padding so he has more control over his arms.

Your best bet is to try tummy time when your baby is fed, rested, and ready to play. His tolerance for frustration will be higher when he’s in a good mood.

Just because your baby is grunting and making noises, or kicking and struggling a bit, it doesn’t mean you have to rescue him. It’s a difficult exercise for babies, so sometimes their noises just signal effort. But when your baby truly seems unhappy or starts to cry, roll him over to his back and scoop him up to a more familiar place.

Remember that since it’s an unfamiliar position nowadays, it takes a lot of practice and repetition for some babies to like being on their bellies. But even a two-minute session counts, and it’s something to build on. Keep at it, and you’ll see your baby’s comfort, and even enjoyment, of tummy time grow.

The developmental consequences of tummy time is the development of crawling, which has profound knock - on effects upon the development of the visual system and upon cognitive development, so keep trying, but also try to make it fun.

Keane. - A Case Study From the Snowdrop Programme.

Keane had been born with his twin brother prematurely, he had suffered a bleed to the white matter of his brain around the ventricles, commonly known as ‘periventricular leukomalacia.’ His cerebral aqueduct was also blocked which meant that there had been a build up of cerebrospinal fluid which had caused hydrocephalus.  This had created pressure on the brain which had caused further injuries.  A shunt had been successfully inserted to drain the excess fluid, but to top it all, the hospital had allowed infection to seep in and Keane had contracted severe meningitis.  This had caused even more injuries.

When I first saw Keane, he was 8 months old.  I had been contacted by his mother and had made the trip from Devon to London to assess his developmental problems.  I walked through the front door and into the kitchen where Keane was sitting in a baby bouncing chair and simply staring into space, - he was totally disconnected from what was happening around him, - it was as though someone had found his ‘standby’ button and pressed it.  Mum confirmed that he was like this most of the time.

The diagnosis and prognosis given by the medical professionals was dire.  There had been massive damage to the white matter of the brain, to parts of the cortex, (especially the visual cortex, meaning that Keane was cortically blind) and to parts of the upper brainstem.  The forecast was that Keane would be very severely handicapped for the rest of his life and would be totally dependent in every way for every aspect of his care.

I knew we had no time to lose here and set about designing a programme of developmental stimulation there and then in the family’s front room, which I duly taught to them that same afternoon.  The programme was designed to attack Keane’s problems in every area of development and to stimulate and direct the natural plasticity of the brain.  I knew from both mum and dad’s attitude that they would follow the programme unstintingly every day.

Two months later, I received a telephone call from mum telling me that she thought Keane was beginning to see and that he had become much more alert.  Obviously I was pleased, but I persuaded her that it was still ‘early days’ and that we should keep our feet on the ground and just continue with the programme.

The time quickly came for Keane’s four – monthly reassessment and the family had elected to come and see me in Devon.  I was delighted at what I saw when they walked through the door of the village hall where I see my families.  Keane was clearly scanning his environment and actually made eye contact with me.  As I put him through his paces it was clear that we had woken this little boy from his stupor.  He had made significant gains in every area of development.  I designed a new programme and sent the family home.

Three years down the line, and over those months and years I have received several telephone calls from mum.  The first was to tell me that Keane had begun speaking and that one of his first words was a very well known expletive!  Wonder where he got that one from, - any ideas dad?  The next was to tell me that not only was Keane now walking but that they couldn’t shut him up and he was driving them potty!  Good old Keane.  Recent phone calls complain of him placing himself on the naughty stair after purposefully being naughty and getting into a fight with another child at a family wedding after a child made impolite reference to his red hair.  Mum often makes him talk to me on the phone himself to explain his escapades. 

Keane is now developmentally superior to his twin brother in every area.  It has been a long journey for the family, who have dragged their son out of the depth of his disabilities by working relentlessly every day for three years.  The programme is relentless and is repetitive, but it shows what it is possible to achieve. 

Keane starts at school next year, but it won’t be the special school that everyone expected, - it will be at a mainstream school with his twin brother.  He is now described as ‘precociously intelligent.’  His doctors are amazed and have no explanation for his recovery.  The main thing is that he has his life back.  Instead of what would have been a life of suffering and problems he has a life of hope and opportunity.  That is how powerful brain plasticity can be.

Anyone who would like more information about the Snowdrop programme should go to our website at http://www.snowdrop.cc  or email us at snowdrop_cdc@btinternet.com or you can call for a chat on 01884 38447