Lap Band Surgery Update – Why we went to Egypt

image

Pyramid Spotting on the way to the hospital to meet the Paediatric Endocrinologist.

After 8 months of trying to get Hana a bariatric procedure in Australia (and another +20KG on her already overloaded little body) my husband and I decided enough was enough: I left Australia, Cairo-Egypt bound, four weeks ago to get Hana the surgery she so desperately needed.

Why Egypt?

Egypt is my husband’s home, and definitely mine too – I lived in Egypt for many years (and also had multiple surgeries done there, including an emergency appendectomy, so has Hana incidentally) – this country has claimed a spot in my heart! I love Egypt and I love Egyptians… With regards to choosing a safe place for Hana’s medical needs, we were lucky. My in-laws are well-connected doctors and Professors at Cairo University. My mother in law swiftly assembled a full team of medical specialists to take care of Hana; from the bariatric surgeon who said he’d perform lap band surgery, to a paediatric endocrinologist, anaesthetist and a pre-arranged ICU bed if it was needed (it wasn’t) all in an excellent, well respected private children’s hospital.

In Australia, I had been obsessively checking my emails every few minutes, waiting for news, updates and a confirmation that Hana’s surgery would be taking place in our Aussie home, Sydney. But that email didn’t come and it seemed that the procedure in Aus was fraught with continual barriers – finding a hospital that agreed to the procedure, finding an anaesthetist, bariatric surgeon, paediatric endocrinologist, supportive paediatrician and paediatric surgeon, access to ICU if needed… to our intense frustration and great disappointment the team and location just wasn’t coming together. When one door would open, another would abruptly close, and Hana was still gaining weight and still suffering on a daily basis.

image

In the weeks leading up to her surgery, Hana frequently cried from hunger and frustration surrounding food on a daily basis.

After pushing for this for 8 months and watching Hana stack on another painful 20 KG (21KG to 58 KG) – tripling her weight in 15 months, crying each day from hunger and food obsession I knew that getting on that flight to Cairo was the right thing to do. Of course I had wanted the surgery done at home, at a hospital I was familiar with and a medical system I knew inside out, but it simply wasn’t meant to be. At least not in our time frame:

When I’d outlined my panic at having to wait so long for the surgery one doctor had said: “From my perspective it doesn’t matter if she is 55 KG or 60KG when she has the surgery,” to which I quietly responded “But it does to me. And it does to her.” We know that Hana will never lose all the weight she’s gained, especially knowing how resistant Hypothalamic Obesity is to any medical and surgical intervention, so for me, every single KG that she gained while waiting for surgery was a disaster, a catastrophe!

I left Australia with a child in a wheelchair, shoes that didn’t fit (no shoe would fit and we couldn’t even get a custom shoe maker to find a mould to fit her feet) and a little girl so hungry she would cry from it every day. 

Hana’s Lap Band Surgery

Hana had successful lap band surgery over three weeks ago. She recovered well post operatively, needing only 24 hours in hospital and we have begun the long road to using the band to help relieve (not cure) her hypothalamic obesity. We are lucky that we have the most experienced lap band surgeon in the world, who is based in Australia, helping us with follow up which is absolutely integral to the success of the lap band.

We had researched travelling to Saudi Arabia as there is a bariatric surgeon there who regularly performs bariatrics on children however he was more keen on a sleeve gastrectomy for Hana’s condition and my husband and I were adamant that we wanted to try a minimally invasive, reversible option before trying something non-reversible considering Hana’s age. As far as I can glean from the studies, Hana is the youngest child worldwide to a. receive a lap band b. have Hypothalamic Obesity and receive a lap band. The youngest child I could find in one of the Saudi doctor’s studies to receive a lap band was 8 and this child did not have hypothalamic obesity.

image

Hana playing in the garden as she recovered post-op. Soaring Cairo temperatures mean we can only play outside very early in the morning or late in the afternoon.

Hana had some post op pain around the incision sites which was greatly alleviated with homeopathy, Staphysagria in particular (how much do I love this stuff! More on that here) for the first week when she was on a liquid diet. The lap band removed all thoughts of food in-between meals during this time and she was only able to manage a few spoons of thickened fluid before becoming ‘satisfied’ (never ‘full’ – this is a sensation we will have to avoid from now onwards). Hana then progressed to soft and mashed food for a week before returning to ‘normal food’. She is extremely compliant in learning to eat with the band – she must chew all food until it is total mush and after swallowing wait a full 60 seconds before taking another bite to avoid blocking the band and stretching the oesophagus above the band. Eating has become something she must concentrate on doing right, it is no longer an intuitive action for her.

(If you’ve been following my blog you’ll know that this isn’t the only medical ‘first’ for my darling Hana over the last 18 months – check out my Oxytocin posts to find out more).

How does the lap band work?

The presence of the lap band over her vagus nerve at the stomach/oesophageal junction is thought to provide a ‘functional vagotomy’ (I think it was my ‘hero’ Prof Hermann Mueller who postulated this) which brings about a much, much, much ached for ‘background satiety.’ Now, when Hana isn’t ‘hungry,’ she isn’t thinking of food. This is utter bliss and is a state that will be worked for continually by adjusting the lap band as and when needed – this is an ongoing project and the right setting will take time.

Secondly – because the lap band slows the food from exiting the oesophagus, there are six peristaltic pushes to get the food past the band as opposed to one – each push brings a message to the brain telling the brain it is getting full, and so Hana will become satisfied after much less food. The band will enable her to consume less calories yet remain ‘satiated’ for longer periods of time which should either: 1. bring about some weight loss 2. Enable her to stabilise.

We chose the lap band for Hana because of a case report we’d read by Hermann Mueller in Germany – it was a longitudinal study following up four adolescents who underwent lap band surgery for Craniopharygioma related Hypothalamic Obesity. Firstly, for all patients, the sensation of hunger went, for me this was reason enough to give Hana the lap band! Secondly, they all lost weight initially BUT, at the end of the seven year follow up, they had regained their weight again. At first we thought that the lap band would buy us time to ‘find something else’ during the initial weight loss period. Now that we have such strong follow up support in Australia we are wondering if we might be able to improve on this outcome with Hana – but even if we don’t, reduction of her hunger plus ultimate weight stabilisation is something we were dreaming of last year!

me and hana cairoI will keep you updated with how Hana recovers post-op. We have a long road ahead as we seek to adjust the band to provide her with the continuous background satiety she experienced immediately post- op in addition to either facilitating some weight loss/bringing about a stabilisation. We will be based here in Cairo with a trip home to the UK during July so please do get in touch if you happen to be in either vicinity! Thanks for reading, and catch you all soon xxxxx

 

Advertisements

  4 comments for “Lap Band Surgery Update – Why we went to Egypt

  1. July 3, 2015 at 2:16 pm

    I think you guys made a great decision! I am so happy to hear Hana is recovering slowly from the operation. I cannot wait to hear the update in a few weeks. Good luck and give hugs to the girls. xoxo

    • Naomi R Cook
      July 6, 2015 at 4:52 am

      Thanks Lindsay! x

  2. sarah
    July 6, 2015 at 10:38 am

    Well done you guys… again, huge admiration for your bravery and persistence in the face of resistance from the ‘experts’. Hana has chosen the right parents:)

  3. September 15, 2015 at 7:43 pm

    I posted this an older post…I’ll repost here. Although now I’m thinking I need to read the rest to be sure this info is still relevant…

    Naomi,

    My name is Joe. I’m a Craniopharyngioma survivor. To shorten my history, first occurrence age 2, recurrence age 12, no pituitary function, damage to hypothalamus. I’m now 25, with a bachelor’s degree and a full-time software developer.

    I’ve gone and sometimes still go through all of this myself. My first and foremost suggestion would be to get your daughter into therapy as soon possible. It did wonders for me. I particularly recommend finding a Neuropsychologist, who will understand EXACTLY what your daughter is struggling with and can truly help her cope. Secondly, if I were not on Anti-depressants, I would still be having to go through all the awfulness your daughter is feeling. It took 8 years for me to venture out and get it done. In addition to a neuropsychologist, I recommend you also visit a Psychiatrist to evaluate your daughter.

    One of the hardest parts of all of this for my family was “normalcy”. Things have changed. Seeking help doesn’t change who your daughter is, or how AMAZINGLY strong she is. Everyone needs help.

    I hope I’ve been helpful and not to forward with all of this.

    Please feel free to contact me should you need any guidance or help. I’ve been dealing with this my whole life.

    — Joe

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: