Diabetes, Education, Health, Parenting, T1D

When ‘I’ is replaced by ‘we’…

“When ‘I’ is replaced by ‘we’…

…even Illness becomes Wellness”. I came across this quote from Malcom X and find it rather fitting for this blog post. This week is Diabetes Awareness Week in the UK and today I wish to share with you a brief and personal view on the clinical team who treat our son Noah. I have discussed previously some of the challenges Kasper and I faced during our early training. I want to emphasize again that without these professionals our child’s life expectancy would be much shorter and his daily physical struggle would be so much harder. When Noah was diagnosed, we didn’t realise how privileged we were to have access to this expert team. I have since learnt that even in research-intensive countries, like the US or the UK, access to similar resources coupled with high quality care varies substantially. It is for these reasons that shining a light on the magnificent work that takes place behind the scenes is, for me, a no-brainer.

Angels in disguise
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Dr. Els van Straaten

Let me take you back to the day Noah was diagnosed in September 2015. We left the hospital carrying this new bomb shell, with the promise that someone was going to call us and tell us what to do next. Dr. Els van Straaten telephoned that evening; earlier that day Noah had received his inaugural boost of chemical insulin and she needed to advise us on getting Noah through his first night. The following day, puffy-eyed, bewildered and deeply confused, we arrived at the DiaBoss clinic located in OLVG West Hospital, Amsterdam, The Netherlands. The clinic quickly became our home from home. Over the next two weeks, Kasper and I underwent intensive training on the what, how, why etc. of treating a child with T1D. One of the first things Dr. Els van Straaten said to us that morning was ‘I may have worked with diabetic children for over 25 years but in 12 months time, YOU will be the experts in your son’s diabetes‘. That sounded totally alien to me at the time; I was struggling to understand the simple stuff like why we count carbohydrate units and not sugar units in food, or how many times a day he would need his blood tested, but I never forgot it. What she failed to mention, however, in that unforgettable moment, was how this metamorphosis from ‘ignorant to expert’ would only take place because of the incredible work, dedication, expertise and patience exhibited by herself and the team around her. We were not alone.

Marion-Tillman-e1340026132840
Marion Tillman

Meet Marion, Noah’s diabetes nurse. Marion is really special. Our daily/weekly contact always starts with Marion; never has her patience faltered nor was she too tired or too busy to extend her unyielding care to Noah. What many of us often forget, or underestimate, is the emotional trauma that a T1D child suffers following diagnosis. For some this lasts a few months and for others it takes years to overcome. We all remark on how small children are tougher than they look, and it is very true; but still they suffer deep trauma. Noah exhibited the impact of his trauma when he became selective mute at school and shut down completely in front of everyone, except his family, over an extended period of time. The reason I am telling you this is because he didn’t shut down for Marion. She had gained his trust like a family member, he knew he was safe with her, he knew she cared for and helped him. That, together with her exceptional experience, is why she is a true angle in disguise.

Taking control back

ninjas-37770_1280Kasper and I have been working with the clinical team at ‘DiaBoss’ (based on the concept of being the ‘boss’ of your own diabetes, and not the other way round) for almost two years now. From our perspective, they operate an unequivocally effective triage of priorities. Firstly, they have built a team of highly skilled pediatricians, nurses, dietitians, child psychologists and administrators; all specialised in treating T1D in young children and juveniles. In short, they are the ninjas when it comes to fighting diabetes. Included in this, is their fight to push the boundaries and further improve health insurance coverage for T1D treatment here in The Netherlands. Secondly, these ninjas not only work with the latest treatment techniques and technology, they also actively seek input from world class experts when new questions or puzzles arise. And thirdly, they bring a superhero level of PMA (positive mental attitude) in delivering tailor-made care; not only for the patient but for the whole family. They put the ‘we’ into everything they do so families like us and kids like Noah don’t feel so alone in the struggle to learn to live with this disease.

Side by side

I am always touched by the interminable enthusiasm the DiaBoss team extend when asked for help in non-clinical matters. They understand how extremely important the parent’s coaching role is in the child’s long-term health. This understanding lays the foundation for their support also within the child’s environment. When Noah started school, Marion visited his school, spoke to his teachers, provided them with information and further support when they needed it. That level of care and attention for one child is mind-blowing when you give it some deeper thought. How many visits must they make each week or month? And yet, these resource-intensive initiatives are exactly what guarantee The Netherlands can truly acknowledge they lead the way in juvenile T1D care.

Here is my list of highlights where I believe DiaBoss prove they turn adequate care into phenomenal care:

  • They hug you when you cry; they completely understand how bewildered and terrified you feel. They are a clinical team who operate like human beings.
  • The DiaBoss helpline is open 24 hours a day, 7 days a week; we can always speak to an on-call diabetes pediatrician who knows everything about our son’s specific case.
  • A few months ago Noah got really sick: he had classic stomach bug symptoms. We had no idea he was suffering from his first diabetic ketoacidosis. His nurse, Marion, distinguished the difference over the telephone and made sure we got to the hospital on time.
  • They never run out of patience when you accidentally get a correction bolus wrong, forget to change a cannula or misunderstand anything they tell you. Since I often converse in a foreign language with them, this happens to me frequently 🙂

#weneedacure

Diabetes, Health, Parenting, T1D

Learning to stick needles in your child

You don’t need to be a parent to imagine the anguish one goes through the first time you are faced with a needle in one hand and your child in the other.

If you have reached this point then you’ve been trained by your child’s nurse or pediatrician and you have stuck a few practice needles into some soft rubber to get used to the feeling of cold metal pushing into something that is supposed to resemble human skin.

But now you need to do it for real. I want to share with you my experience of these unique moments where I had to learn to do something totally unimaginable to my 3 year old son. Your experience of this might be different, I don’t know. T1D (Type 1 Diabetes) is a personal disease and different people experience it in different ways.

The practice run is over. You need to load the finger prick pen with a small lancet needle, pull the trigger back and find a soft, warm spot on the side of one of your child’s fingers. You need to push the button and make your child bleed. You have no choice. You don’t look in their eyes because you know they will see your fear. They will see how much you are fighting every single parental instinct inside your body. They will hear the screams inside your head. They will feel the warm tears drop on your cheek.

portrayal-89189_960_720You push the button and immediately you see the pain you have caused. You see your child’s eyes asking you ‘why?’ as you milk their tiny finger for a drop of blood. You tell them how brave they are, how important it is you do this to them and how they will feel better soon. You want to vomit. You want to take T1D from them and put it inside you instead. You’ll do anything to take their pain away but you can’t.

And then you feel some relief, some strange joy that you made it this far. You took your first blood glucose reading and another step closer to being their pancreas. You did it! And though you know you have to do it a million times again, you also know it will never be harder than the first time. You breathe again. You look at your child’s nurse and they are beaming back at you. Their training is working and you are learning how to keep your child safe again. You turn to face your child and there are no more tears, the pain has quickly subsided and something else has distracted them again. Phew. Your muscles relax, the tension subsides and you feel like you have reached the surface again.

T1D waits for no one. It is a relentless 24 hour cycle of work, worry and pain. No sooner have you recovered from your first blood glucose reading you are quickly heading straight to the next hurdle. Inside you are begging for a break, some time to digest everything that is swirling around you. Now you are being asked to calculate the required insulin per carbohydrates that will be consumed for lunch. You have a brief flashback to high school Mathematics lessons and wonder why you didn’t pay more attention. You make a spot calculation but you know you need to double and triple check you have done it right. You can’t trust yourself anymore because your head feels like a ship wreck stuck all alone at the bottom of the sea bed under cold and murky water. You know you cannot think clearly but you must make life-saving decisions now and forever. You quickly wonder how you will manage to do this while juggling the shopping in the supermarket or when you have been woken from the dead of your sleep in the early hours. But you park this thought because the nurse is asking you to put a clean needle on the insulin pen and give your child a shot.

Your hands begin to shake again (will that ever stop?) and sweat begins to surface. Take another breath you tell yourself and just do this. Get it over and done with. If you delay you prolong your child’s fear. They know it is coming, they see it happening. Don’t make it harder for them just because you are scared witless. The insulin pen is ready and double checked. You turn to face your child.

You steady yourself and gently pinch their perfectly pure skin. No delay. In it goes. Push the button. Release. Withdraw the needle. Rub the punctured wound. Grab them in your arms and wrap yourself around them. Dry their tears and fight back your own. Tell them they are a superhero. Tell them how proud you are of them and how much you love them. Silently beg their forgiveness and curse this world you find yourself in.

My lowest point of learning to inject my child was two weeks after his diagnosis. By this point the finger prick tests weren’t too bad for him anymore. He fought them in the beginning but what the nurse told me was true, kids very quickly learn to accept at such a young age. The insulin shots were more painful for him though and that meant more of a struggle to accept. Noah started to cry the second he saw the insulin pen and then he would say ‘I’m so sorry Mama, I’m sorry, I won’t be naughty anymore’. My heart broke into a million bits when I realised he thought we were sticking him with needles as a punishment. He was 3 years old and too young to understand what T1D is, too young to even understand the concept of ‘forever’.

After about 2 months of fighting the insulin shots he relented and accepted them. Nowadays he fights when a new cannula is inserted for his pump or we need to change the sensor on his arm. But in the early days when we had to learn ‘pen therapy’ he was enduring 4 shots a day plus 6-8 blood tests (more if he was sick). That is a lot of needles for any kid to accept don’t you think? I had no idea so many needles were required on a daily basis before Noah was diagnosed. I, like many millions of others, was totally ignorant to the complexities involved. #weneedacure