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Sunday, February 16, 2025
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Findlay’s Story

Findlay was born on 27th April 2009 5 weeks premature due to a placental abruption. After spending 17 days in NICU and SCBU he was able to come home.

 At around 6 weeks of age he aquired a chest infection which despite antibiotics from the GP he was unable to fight off himself. The infection caused his temperature to plummet to 28C and he was rushed by ambulance to hospital with severe hypothermia. Thankfully after a blood transfusion and a lot of medical care he recovered but it was then that his poor weight was noticed.

He was diagnosed with reflux and was put on medication and feed thickeners to help and he started his weekly trips to hospital for weight checks and to see his dietician. His weight continued to be poor and his vomiting got worse. From around 9/10 weeks of age he has been fed by tube. He had many stays in hospital over the following months and despite being fed via naso gastric tube (a tube going down the nose into the stomach) slowly 24 hours a day he was unable to keep enough food in him and started to lose weight. He was on maximum doses of every medication the hospital could give him. He had several endoscopies and an oesophageal biopsy done which confirmed that it was not just reflux it was severe Gastro Oesophageal Reflux Disease (GORD). 

 In September 2009 he had an naso jejunal tube fitted which bypassed his stomach and put the milk directly into his bowel. This allowed us to get more feed into him but still not enough and the feed started coming back into his stomach which he then vomited up and the weight loss continued. In November 2009 he had major surgery which means he can now not be sick. He had the top of his stomach tied around the bottom of his oesophageus to make it a 1 way valve so food and drink can go in but not come back out, he had the muscles around his diaphragm tightened and an angle created in his stomach that he did not naturally have. He had several complications following this surgery which meant another 3 trips to theatre but finally after a few days short of a month in hospital we were allowed to take him home. Due to his severe GORD Findlay associates food and liquids with extreme pain and vomiting and so he will not eat or drink and is fed via a gastrostomy tube. 

Findlay’s development had been very delayed and he had unusual muscle tone but it had initially been thought that this was down to the poor nutrition caused by the GORD and once he had the surgery he would come on in leaps and bounds and catch up.

Sadly this has not been the case it was discovered when he was 8 months old that he has a very rare chromosome abnormality called Trisomy 12q. Whilst he has made improvements in his development he is still severely delayed.

Findlay’s opthamologist discovered that he had a unilateral cataract in his right eye. Cataracts are very rare in babies (only around 1 in 10,000 babies has a cataract) but they are more common in babies like Findlay who have a chromosomal abnormality. Findlay underwent eye surgery in May 2011 to remove the cataract as they found that if he could read he would only able to see the very top letter of an eye chart with that eye. The future now holds a lot of long term work to try and restore more sight to that eye but we have been told it is possible that his sight may never improve in that eye. Since his surgery Findlay has undergone a second operation to clear away scar tissue which
formed and fixed his pupil so that it could not dilate naturally. During this second operation his eye sight was retested and Findlay was subsequently prescribed glasses which he now loves. Findlay had another operation in June 2012 to remove a
membrane that had formed over his eye and was restricting his vision further.

Findlay has a very poor tolerance of volumes of feed due to his gastric dismotility and so is continuously fed via a feeding pump for 16 hours over night and has 3 boluses through his pump during the day. It is a constant battle with Findlay’s stomach to
try and increase the rate of his overnight feed and the volume of his boluses with varying degrees of success. Due to his poor tolerance of volumes he has to have his already very high calorie feed concentrated even further and also has liquid fat added to get maximum calories into a smaller volume. Despite this his weight gain remains poor.

Findlay remains on high doses of medication 4 times a day to help his stomach to empty and also requires large amounts of a couple of different laxatives throughout the day to move things through his bowel as his bowels do not work properly on their own.

In late April 2010 Findlay started having several types of seizures and his EEG in June 2010 confirmed epilepsy and he was started on medication. To date the medication has still not fully stopped the seizures and he continues to have a variety of different types of generalised seizure although they are becoming better controlled with changes in the dose of his anti seizure medication.

He has a *fantastic* medical team at the hospital and excellent support from his speech and language therapist, his physiotherapist and his occupational therapist.

The speech and language therapist is currently teaching us a special type of sign language called Makaton to use with Findlay as he cannot speak. Much to our excitement Findlay has recently started to use some signs including ‘where’, ‘cuddle’,’goodbye’ and ‘sit’.

His physiotherapist works on building his muscle strength as he has hypotonia and hypermobility and we do physiotherapy exercises with Findlay several times a day to help his muscles and his development. Due to his hypotonia Findlay wears ‘splint’s called AFOs and KAFOs on his legs to give his muscles support.

The occupational therapist helps with finding equipment for Findlay to help him with daily living activities although due to his extremely small size this is a challenge as there is a lack of equipment designed for people this size and much of the equipment there is is not usually available on the NHS.

Findlay has recently started horse riding which he absolutely loves and squeals whenever he sees the horse he rides. It’s wonderful for him as it combines physio and sensory work with fun and he has a look of pure happiness and pride on his face when he rides which his amazing to see. His favourite thing to do is go for a hack in the woods and he thinks it is hilarious if leaves brush against his hat and he giggles away . He even took part in a fancy dress class at a local horse show in August and came 6th out of a big class, we were so proud of him 😀


Findlay in his standing frame using his interactive bubble tower


Findlay concentrating hard whilst riding Luca


Findlay in September 2012 doing some physio work in the sunshine using his partially weight bearing walker that the IET very kindly funded for him in January.

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