Many kids with grade 4 and 5 CP have feeding tubes.
I am always amazed at how connective tissue targeting therapies can help these children on their journey to eating by themselves. However, not all children are able to make this step. While this can be disappointing to parents, I always feel that these therapies not only change function, but also metabolism. So what you eat is probably more important than eating itself. In the previous posts and again here I will emphasise that eating real food will help the body on its journey to healing. So many mothers I have spoken to attest to how real food blends changed their children’s health for the better. The reasons why they say so vary and range from improved reflux, better weight gain and even decreased epileptic seizures. Probably even most importantly, mothers like giving real food that they cook and prepare at home because it’s a way of “demedicalising ” a life that is just so steeped in doctors visits, therapies and surgery. It’s just a little bit of normality within the chaos of medical interventions.
In the past, medical professionals may not always have been helpful on this journey. This is because they worry about bacterial contamination of the prepared food and also “not knowing” if the blended food would contain all the basic nutrients required. In addition, there is the risk that the tube might become blocked when thick blends are used. I find these reasons quite intimidating and I can see why some parents would stick to prepared formulas. But one tends to forget that years ago, blended food was the standard before formulas became widely available. Indeed, nowadays several hospitals’ enteral feeding teams support newer, more embracing guidelines on this topic. The truth is that people are more aware of the benefits of eating real food and parents love to contribute to their children’s health journey in this way. It is great to see that the medical community is being supportive of this trend.
I have recently had the priveledge of interviewing an ABR mother , Michele Pattison, who also has been on a blended food journey with her daughter. This is their story. Thank you for sharing with others so generously Michele! You and Ashley are heroes in my eyes and an inspiration to us all!
Michele Pattison, mom to gorgeous nine-year-old Ashley (pictured above), discusses how she’s been able to boost her daughter’s nutrition through blended food for tubefeeding.
Q. Please talk about Ashley’s birth and diagnosis
A. Ashley was two weeks overdue when I was induced. Ten minutes after induction, Ashley’s heart rate dropped. Unfortunately the midwife in charge had left the room and returned five minutes after the bradycardia [abnormally slow heart beat] had registered. Her first reaction was that there was a problem with the monitor and so she replaced it. However this one also indicated a very low heart rate. Only then did she call for help.
Ashley was born via crash Caesarean and, in total, she had reduced oxygen supply for 27 minutes. She was born floppy, white and not breathing. She was intubated, taking her first breath eight minutes after birth. Her Apgar Score was 0 at birth, 4 at five minutes and 4 at 10 minutes.
As soon as I had recovered from the general anesthetic, when Ashley was about 2.5-hours old, the doctors told us about the potential of a body cooling study (ICE trial). This decision had to be made before she was six hours old, and though we agreed, she was randomised to standard treatment and did not receive the body cooling. She had multiple seizures and at seven days old, her MRI showed brain injury mostly to the basal ganglia. Her diagnosis is Hypoxic Ischaemic Encephalopathy resulting in Cerebral Palsy and quadriplegia with dystonia.
Q. How were you able to feed her?
A. Ashley had no gag reflex after birth, so she was fed via a nasogastric tube [a tube passed into the stomach via the nose] for the first five weeks and then she had surgery for a gastrostomy [an opening directly into the stomach through the abdominal wall]. I expressed milk for four months and gave this to her firstly via the nasograstic (ng) tube and then via the gastrostomy – I also gave her very small tastes of milk. After four months I was no longer able to produce milk so we switched to baby formula.
Q. How challenging was feeding?
A. We didn’t get the chance for any sort of normal feeding after birth and once she had the gastrostomy it was not easy feeding her via the tube. Ashley had severe reflux which made every meal painful for her and distressing for us, she also vomited daily and often several times a day. This went on for months, and at nine months old, she had a Nissen fundoplication [a laparoscopic surgical procedure] to prevent vomiting. This helped but the vomiting was replaced by severe gagging episodes daily which, after several months, caused a hiatus hernia.
Q. Did ABR have any impact on her development?
A. Ashley was just over two-and-a-half-years old when we came across ABR. We read up as much as we could and hoped ABR would improve Ashely’s reflux. It took four months before we could attend our first clinic, which we did in Sydney, Australia, and eight months later the daily gagging sessions – particularly those in the morning – completely stopped. And she started smiling on waking. She was no longer waking in pain – this was truly amazing!
Prior to ABR, her chest had a depression at the sternum, her floating ribs were protruding, she had a subluxed left hip, her shoulders made a clicky sound and she struggled to keep her head at midline. When trying to help her sit on the floor or on a massage table she would extend backwards. In a prone position, she struggled to lift her head off the ground – this position was always a struggle for her because of her reflux.
After several months of ABR, beyond the improvements in her reflux, we could also see structural changes. Over the next two years – from age 3 to 5 – her subluxed hip repaired, with surgery no longer necessary. Ashley slowly began to gain control of her arms and hands. For example, at around the age of two, she couldn’t bring her arms onto the tray in her pram without assistance. Often her arms would be off the tray and extended behind her. She struggled to get her hand anywhere near a target unless you placed her sitting in the best position possible.
Now – after six years of ABR – she easily lifts her hands onto her tray and will reach out and try to grab an object – many times with success! Fine motor skills are, however, difficult. The depression in her chest has completely gone, the floating ribs no longer protrude and her shoulders don’t click. Her head control has improved a great deal and she can turn her head either way, look down and look up which has just happened this year! However, she still struggles to maintain midline head control when she is tired.
Q. Please tell us about the journey to blended tubefeeding
A. Ashley had expressed breast milk for the first four months via the ng tube, and from five weeks on, we fed her via the gastronomy. When I could no longer produce milk, we fed her baby formula and at 14 months, we switched to special formula blend for tube feeding. Ashley developed reflux very shortly after her gastrostomy. While she might have had the beginning of reflux before the operation, it now became very severe and painful – she was diagnosed with gastro-oesophageal reflux disease. We had to feed her at a very slow rate. When she was nine months old, her low weight gain and vomiting resulted in the previously mentioned Nissen fundoplication.
When she was about a year old, I started giving her small tastes of pureed foods, such as mashed veggies, before topping up her nutrition via the gastrostomy tube.
Ashley was coping with these tastes of food really well and, when she was about five in January 2012, I tried really hard to reduce Ashley’s tube formula and encourage her to eat more. This was very difficult and after four weeks, with a weight loss of a kilogram – she was only 13kg to start with – I went back to just giving her tastes of food without the pressure of making her eat, plus tube formula feeds. She clearly struggled to eat enough to maintain her weight, let alone put any on.
I had a few problems with tube formula, though. The first was it’s hard to identify the ingredients as being food and the second was that it was very difficult to balance her bowel movements. She became constipated very quickly or would have very soft stools. When she was sick with a cold or tummy bug, she didn’t cope well with formula and it had to be given very slowly and in very small amounts.
I hoped that eventually Ashley would eat more orally, so in order to prepare her body for real food, I decided to investigate blended foods. The idea of real food made sense – after all, that’s what most of us eat! A friend had started her son with CP on blended food a couple of years earlier and it had improved his health significantly. She recommended a book called ‘Complete Tubefeeding’ by Eric Aadhaar O’Gorman and I read it from cover to cover. I started Ashley on blended food in June 2012. I informed the dietician at the hospital that I was going to do this and soon after I started I gave her a list of the foods that went into the blend so they could run an analysis of it. They confirmed that they were happy that she was getting what she needed.
Q. How has Ashley responded to blended food?
A. From the start, Ashley coped very well with blended food. She has six meals every day, with 250ml per meal. This works best for her as she doesn’t cope with amounts any larger than this. You can make the blends thicker or thinner depending on volume tolerance. Her weight has increased beautifully – she has made steady gains recorded with every paediatric visit.
Up until the age of seven and a half, she was receiving the blended food plus those small tastes of puree and she was doing very well. But then her overactive gag reflex became more severe unexpectedly. And in the last two years (she is nine years old, now) she has really begun to struggle with oral intake and has very little now which is such a shame.
But knowing that I control what is going into her blends is great. I really enjoy making them for her. I know exactly what she is having and I am happy in the knowledge that she is getting real food. While I would love her to eat orally, I realise that to maintain her weight, she needs to get food via a tube. My relationship with food is one of enjoyment – I love eating – and I wish she could have that experience, too. However I now realise that her relationship with food is not the same as mine. If she is not comfortable then she cannot enjoy her food.
So while her ability to eat has not improved, many other areas in her life have. This is what we work on now instead. I could spend hours a day trying to get her to eat but for what benefit? Life is short, and for her as many moments as possible should be about enjoying life, not about struggling. Life is a struggle for her in every aspect, but she has an amazing attitude and she is here to enjoy as much as she possibly can. I know she is getting what she needs nutritionally, she is healthier than she has ever been, she is well hydrated and because of this, she is able to attend full-time, mainstream school, she is able to learn, she is able to sleep well and to enjoy life. This is great.
Q. How do you manage Ashley’s liquid intake?
A. I use a syringe, and give 140ml of free water using the gravity method four times during the day. I do this half an hour before meals and then I do 20ml water flushes with each meal.
Q. Do you have any advice on how to change from formula to blended food?
A. As a first step, I would recommend reading ‘Complete Tubefeeding’. In here you’ll find a number of different style of blended food, from Calorie Counted blends to Group Rotation blends. This book will give you everything you need to know about changing over. I’d also recommend contacting your enteral feeding team to discuss your plans with them. Hopefully they’ll give you a lot of support.
Q. If you could give your younger self any advice, what would it be?
A. Not to put pressure on myself to get Ashley to do everything! There are so many things to work on when you have a child with CP. Challenges are not just limited to physical development, though that is a massive part in itself – there’s also non-verbal communication, cognition, vision, sensory overload, oral intake, structural deterioration, social interaction for Ashley as well as us as a family. Any one of these things on its own is a big deal, but combined they can be overwhelming.
I would tell myself that I cannot take this disability away, and that if I cannot fix every single thing, then that doesn’t mean I have failed my daughter. We tried to do so many things in the first five years, it is incredibly exhausting, but ABR and blended food have truly changed her life.