‘Incompatible with life’

It’s trisomy 18 awareness month and recently been Rare Diseases Day, so I thought I would take the opportunity to share few patient stories.

Trisomy 18, also known as Edward’s Syndrome and Trisomy 13, Patau Syndrome are both dreaded diagnoses. A child with these syndromes has an extra chromosome at position 18 or 13 which leads to numerous congenital problems involving the brain, development and sometimes the heart.

Both are also associated with a very much shortened lifespan, and therefore when diagnosed antenatally, parents are offered a termination of the pregnancy. Two very unhelpful terms that have been used to describe the conditions, are ‘incompatible with life’ or ‘lethal’.

Pictured here is beautiful Atarah who turned 1 year old last week. She also happens to have Trisomy 13. As one would expect, her parents were counselled that the child wouldn’t survive long; they should expect ‘anything, anytime’. However, after about 7 months of fear and distress, while trying to live a normal life and enjoy their baby girl, geneticist who confirmed the diagnosis, but now explained that Atarah has mosaic trisomy 13 – not all her cells are affected, which means she has a less severe form of the condition.IMG-20200301-WA0005

On the other hand, baby Grace died last week at the age of 3 months. The Edwards Syndrome diagnosis came as a massive shock to her parents after she was born. They were also counselled that Grace would not survive long. They grappled, asking what does that mean? How should we manage her? Do we bother with the cardiology appointment knowing that in a South African state hospital, she will never be offered heart surgery if there is a problem?

No one can give an accurate answer. But gentle, honest discussion and good palliative care can help.

Baby S. is 9 months old today. She has developmental delay and visual problems but she is gaining some weight and is a happy baby. One specialist doctor that was asked to assess her told the mother bluntly, “there is not much point as there is nothing we can do for her anyway.”

So what do these 3 children have in common? Trisomy? A rare disorder? A syndrome?

Way more than their diagnoses, these three little girls have lived a life worth living and have brought joy and love to their families.

What about for us as healthcare professionals? These children help to teach us that we are not our diagnosis. Each of us is a unique individual with a story to write. That whether a life is 3 hours, 3 months or 103 years, it is still a life. And instead of trying to prepare parents for a child ‘that won’t survive long’ we can help parents to get on with the business of loving and living with their child.

4 months is a very long time….

As the nurse introduced him to the other children, this skinny boy stared hard at the floor, tears streaming down his cheeks. He was being admitted to the multi-drug resistant TB unit at King Dinizulu Hospital. A long way from home or anything familiar, the other more experienced children quickly came to his aid. “Come and sit with us. Join us colouring. Here, sniff this sticker – it smells like fruit.”

I witnessed this ‘lump-in-my-throat’ interaction when I visited our early childhood development programme – Ekhaya Lihle last week. It is based in the multi—drug resistant TB unit. This unit is the only one in KwaZulu Natal so children are admitted here from all over the province. The average length of admission is 4 months and treatment consists of numerous pills and syrups.

Before COVID-19, family members were allowed to visit but some children don’t see a family member for their entire stay because of distance and cost of travel. Of course now, no visitors are allowed.

There is a department of education school on the premises of the hospital but it has also been closed during the lock down.

Ekhaya Lihle which was started for the pre-schoolers, is now a life line to all the children in the ward. Sandra Langa, our teacher, puts a great deal of enthusiasm and energy into providing educational activities to these precious souls. The healthcare team in the unit, together with Sandra become their family during this time. And to each other they become siblings.

Just before I left, one of the younger babies started to cry and was rapidly comforted by another child. I managed to catch them in this photo.

We are often asked; how do you do your job? My standard joke response, is that I drink wine! Well thanks to Cyril and COVID – not so much anymore.

But in all seriousness, we can do our job because we are making a tangible difference in the lives of the children and families we work with.

Help us to continue our work by clicking this link.

Goodbye Mr N

My heart broke as they walked away, knowing I would never see him again. This gentle, clever 9 year old boy with a devastating cancer.

Born with a rare skin condition Mr N’s life has been hard. Living in rural South Africa with its harsh unforgiving heat, he has had to try to avoid the sun. His skin is extremely sensitive which predisposed him to this aggressive skin cancer on his head and face.

I met him when he was admitted to hospital for radiotherapy; treatment that was not aimed at cure but trying to shrink the tumours and stop the bleeding. It worked for a while but the cancer has continued to grow and is an open wound.

The day I saw him, he had travelled over 6 hours to come and see us in Durban. He has his whole head bandaged with only a bit of his face peeking out. Mr N and his mum are both so grateful for the morphine which is easing his pain. But he is tearful. He just wants to be like other children. We talk about that for a while; the emotional pain, the loneliness and the isolation. He has been happy about lockdown because he can’t go to school anymore anyway. He is too ill and the other children tease him about his head.

We talk about the bleeding. The wound bleeds a little every day. Last week his blood count was dangerously low so his local hospital gave him a transfusion to buy a bit of time. We talk about time – the quality of his time. His burden is very heavy with a tumour that is growing, daily bleeding and dressings, feeling weak and tired. They agree that he is tired – tired of it all.

Their decision after this long and emotional conversation is to keep Mr N at home; avoid the hospital and focus purely on comfort and trying to enjoy the time he has left. Armed with a plan and a bag full of comfort medications, we say a tearful goodbye.

And my heart breaks for another parent who is about to lose their child.

This is the work of Umduduzi. Please help us to help them.

Click here to sign up for a monthly debit order or use the Zapper code below.

Desperate Times…..

Our palliative care team works in many different hospitals and we have been horrified at how low the average health professional’s morale is right now. The unpredictable nature of the pandemic and the constant threat of infection, infecting others and having to cover for those off sick, is overwhelming. So this week we thought our Facebook/Social media theme should be #careforthecaregiver.

However, Tracey and I had a meeting today to review all matters ‘Umduduzi’ and realise we have to change the theme. Life as an NPO worker is never easy. We knew things were going to be even more tight financially this year with the cancellation of a few fundraisers, but we hadn’t anticipated just how much the entire global economy would impact our other sources of funding. Even our tiny MySchool contribution has nearly halved; fewer supporters able to shop at Woolies perhaps?

We have been so grateful to those who have continued to donate and for the innovative fundraising efforts by some of our most loyal supporters. At this time, we have funds for 6 more weeks left. After that, we don’t know what will happen. Our services can’t come to a halt but at the same time we can’t ask our team to work for free. A truly daunting time.

 The complete lifting of lockdown is not going to happen any time soon. Reality is that we will never return to ‘normal’. So we have to get working on even more creative fundraising ideas.

In the interim, if you have experienced the value of our work or can imagine how different paediatric services would be in KZN without our support, please consider helping Umduduzi right now. The key is going to be finding many, to donate a little (or a lot!). Sign up for a regular debit order and encourage your friends to do the same. Make Umduduzi a beneficiary on your My School Card or make a once off donation that you can declare for tax benefit. If 1000 people donated R100 every month that would almost cover all over costs!

We hate asking for money and just wish we could be in a position to focus on our core work. But sadly, until medical aids fully recognise the value of palliative care and the government finds a way to finance it, we are doomed to remain fully donor dependent.

We cannot talk about #careforthecaregiver if we cannot even take care of ourselves. Please help us to continue our work with the most vulnerable.

Warmest wishes

Julia and Tracey

Mind the Gap

I have just come off two different zoom meetings and am left with and overwhelming sense of ‘Mind the Gap’. If you have travelled on the underground train system in the UK you will be aware of the voice over the loud speaker on repeat, that reminds passengers to ‘mind the gap’ – don’t fall between the platform and the train. It is now an iconic phrase.

It is starting to feel that way in palliative care. For years, the palliative care community has been pleading with the medical fraternity to adopt the principles of palliative care. And NO, palliative care is not the same thing as end of life care. It is about filling the gaps in caring for patients. It is not disease focused, it is not territorial and it is not about the doctor.

Palliative care is all about working in a team of health care professionals that can fully, truly see the whole patient in front of them.  And who is the patient?

Who is a patient

Right now, we have patients that we can’t fix. We have always had patients we can’t fix, but now COVID-19 has taken this ugly fact and smashed it into consciousness. Suddenly health care workers are acutely aware of the gap and they are scared; because it can’t be fixed with PPE or a ventilator.

Health care workers all over the world are being confronted with extremely ill, highly symptomatic patients that deteriorate rapidly. They have little or no training in the management of pain and shortness of breath. They have little training in caring for the dying, let alone the patient that is dying alone, separated from family, isolated from others and disconnected from their healthcare worker by what looks like a space suit.

Caring in COVID-19 is requiring raw honest conversations with patients and their families. Very often only over the phone.

This is the gap in healthcare; caring for the whole patient only highlighted now by the sheer volume of patients and level of distress in healthcare workers and society across the board.

My only hope is that post COVID-19, in our new normal, the world will have recognised the value of palliative care and not lose what we have learnt.

All seriously ill patients have the right to good palliative care. Let’s go back to being human!

For further resources refer to www.palprac.org

 

 

#PalliativeCareinCorona

What crazy times we are currently living in! The COVID-19 pandemic has touched everyone’s lives in some way and no-one is sure when “normality” will return. We can guarantee that whenever that is, it will be a normal like nothing we have ever seen before.

As South Africans we went into total lockdown on 26th March 2020. No-one, except essential services were allowed to leave their homes. This has basically continued on varying levels since 1st June 2020. Many people have lost their jobs and families have been affected on so many levels. As an essential service we have continued our work, visiting hospitals and where possible doing home visits – permits to travel in hand. Our families, who already experience a high level of stress given their childrens’ diagnoses, are even more stressed. Do they bring their child to the hospital for their appointment? Will they get COVID-19 if they travel? What would a COVID-19 diagnosis mean on top of the existing condition? Do we let someone from the home go and buy food? Can we afford food?

Umduduzi – Hospice Care for Children’s services have warped slightly in this time becoming more of an advice station and a food supplier. Many of our families no longer have any form of income as they were not permitted to continue their specific line of work during lockdown. Some still have been unable to earn a living despite some of the restrictions being lifted because what they do for a living is still banned. Families are desperate and we have stepped in where possible to assist with food vouchers and food parcels. Unfortunately, these only meet the need for a short time and we ourselves have limited resources because of COVID-19.

As a donor-funded organisation we rely on fundraising initiatives to raise money. With the onset of lockdown all of our planned events were cancelled and it is unlikely that the rules will change before year-end to allow us a chance to raise much-needed funds.

The world has changed forever but the need for palliative care remains. Thank you to everyone that has enabled us to do out work – to provide comfort and care to children with life-limiting and life-threatening illnesses – something that has become even more imperative in the time of COVID-19.

Tracey Brand, Global Giving Report June 2020

 

Lockdown, Ubuntu and the Birds

Written by Tracey Brand, Umduduzi Director and Palliative Care Medical Social WorkerIMGP5906

One of my favourite pastimes is feeding the wild birds in our garden. I love watching them waiting for the feeders to be filled and once I’ve stepped back they all come in to eat. Finches, weavers, sparrows, manikins, doves and shrikes all sharing a meal with everyone getting a turn to have their full, all appearing to respect each other’s moment at the front. The air fills with their chirps as I imagine they’re sharing the story of their day. A true example of Ubuntu – compassion and community.

That’s is something that I’ve noticed during this time of lockdown, Ubuntu. We have lived in our home for 5 years and not once during that time have we seen our neighbours in the complex next door use their balconies or even speak to each other. As the lockdown days progressed this quickly changed; neighbours on their balconies sharing stories while having a drink and chatting for hours. This culminated in a fitness challenge on the weekend. Anyone who wanted to take part could. A course was set and individually they attempted it – social distancing observed the whole way through. Times were taken and winners congratulated. Even those that weren’t fitness freaks were on their balconies cheering the others on. The comraderie was something to behold. The celebrations and the conversation continued into the night until the rain chased everyone inside.

Isn’t it crazy that a deadly virus had to descend upon our country for Ubuntu to truly be realised? I feel that these guys have spoken to (and possibly gotten to know) each other more during this time than the entire time they have lived there. Will it continue after lockdown? I hope so. Will neighbourly behaviour and effectively Ubuntu remain in their minds as we go back to what will be our new normal? Only time will tell.

For now I am going to enjoy the birds feeding and the neighbours cheering highlighting that as South Africans we can come together in all our shapes, sizes, genders, religions and colours for the sake of each other.

IMGP5977

Adding life to years

This year has been seriously difficult for everyone. COVID-19 has interrupted and in many cases ended life as we know it.

As an NPO providing care and support to some of the sickest and vulnerable children in KZN, we continue to see the true hardships of life and poverty. Now made worse by the lock down, lack of earning and fear of travelling with their very ill children. It’s not always as simple as #StayAtHome.

Like many not for profit organisations, we have had to postpone or cancel most of our fundraisers for the year. We have enough money in our bank account to last a full 3 months, but after June? Who knows.

We appeal  to everyone to consider supporting Umduduzi. A small monthly debit order or make us your MySchool beneficiary. Every bit counts.

We wish you all great peace in these times of uncertainty. Have compassion for others and also for yourself.

Hope vs Denial

Isn’t hope a wonderful thing? It is part of the essence of the human condition.

Some of you that are Facebook friends will know that we have had some bad luck lately; nothing too serious but our appliances, cars and other electrical goods have conspired to ensure a co-ordinated draining of the bank account.

I heard an advert for the National Lotto today. Suddenly, I know I can win. I am plotting a way to stop and buy a ticket. The one thing I can remember from my statistics course is the following: “Statistically you are more likely to die in an accident involving a mattress or a pillow, than you are to win the lottery.”

Sigh, I still spent my lotto winnings in my head!

It’s hope. And we all need to have hope.

I saw a child and mother this week that have left me reflecting on hope and what it means.

The child is an insulin dependent diabetic. The blood sugar hasn’t always been easy to control and the child has had previous hospital admissions for this. The most recent admission resulted in such deranged blood sugar causing fitting and ultimately brain damage. The condition is bad, really bad. However, the mother puts on her make-up, comes to the hospital smiling and greeting us all warmly, in a heartbeat gets involved in the care her child.

Now, part of my job as a paediatric palliative care is to prepare for the worst while hoping for the best. Mom and I have a 90-minute heart to heart and we talk about everything. Mom doesn’t want to prepare for the worst. She knows her child will get better. Despite all the counselling to the contrary, Mom knows we are just health professionals; we are not God. So I try again. I ask her to consider the worst case; what if the sugar becomes difficult to control and her condition gets suddenly worse?

What I am wanting to do is write an advance care plan to ensure we only act in the child’s best interests and do not in any way increase suffering. Mom smiles knowingly, she says, “Doctor, I know what you are trying to do. I hear you. I am not in denial. We have a funeral insurance policy and will use it if we have to. When God wants my baby, He will take her. So until then, I will love my child and hope for my child as a mother should.”

I am often called to a parent “in denial’. It’s a term doctors love. But more often than not, during open and honest conversation we find that hope is not the same thing as denial. Hope is a coping strategy. It’s a survival skill and a parent’s drive to advocate for their child when the health professionals lose hope.

It’s not necessarily and certainly not always a bad thing.