Children with congenital and complex health problems: The eliminated future?

macro shot of water drop on green textile
Photo by Min An on Pexels.com

This article is not about children who are eliminated in the early stages of pregnancy. That is a related but different story. In that story, if a foetus is found to have any anomalies (according to various tests), a common advice or thought is to terminate the pregnancy. Nobody is either prepared or advised to raise a child with disability or complex medical problems. But this article is not about them.

This article is about foetuses that manage to survive pregnancy and come into this world with various kinds of defects/health problems or develop complex medical problems in early childhood. And my question at this moment is just one. Who is going to ensure their rights including survival and growth?

WHO (2016, September) provides us with the following facts regarding situation that exists worldwide[i]:

  • An estimated 303 000 newborns die within 4 weeks of birth every year, worldwide, due to congenital anomalies.
  • The most common, severe congenital anomalies are heart defects, neural tube defects, and Down syndrome.
  • Although congenital anomalies may be the result of one or more genetic, infectious, nutritional, or environmental factors, it is often difficult to identify the exact causes.
  • Some congenital anomalies can be prevented. Vaccination, adequate intake of folic acid or iodine through fortification of staple foods or supplementation, and adequate antenatal care are just 3 examples of prevention methods.

At India’s level, although no specific and reliable data on monitoring of children born with congenital health problems was found to be available or accessible, Bhide and Kar (2018) estimate that as many as 472,177 (421,652 to 522,676) births affected by congenital anomalies may be occurring in India each year[ii]. While this is likely to be under-estimation as some anomalies may not have been reported or may get reported or screened later in children, this is a clear indication that congenital birth anomalies are not rare in India.

The other important aspect that has to be acknowledged is that while some of such anomalies can be prevented through low cost strategies, some cannot be prevented and will require significant expenses. Some children will require frequent hospital visits and tests. Some children will require intensive care as well as expensive surgeries (costing lakhs of rupees). If you don’t know such families personally, go online and check crowd funding platforms such as Ketto, Milaap, ImpactGuru, and so on.

I looked at the fundraising campaigns on Ketto. As on 26 October 2018, 83% of all the money being raised for health was targeted at treatment of children. Further, 92% of all the money being raised for children/child related concerns was targeted for treatment of children. At the time of collation of this data from Ketto website by me, 6 campaigns were running in the ‘children’ category with total target of INR 3990000; and 6 campaigns were running in the ‘health’ category with total target of INR 28100000.

While such disaggregated data was not available for Milaap, their team shared the following data (on 9 November 2018): 19595 fundraising campaigns focused on health problems were running with target to raise total of INR 1,050,086,647,520. Percentage of the funds that are targeting treatment of health problems of children could not be calculated as their filters for segregating data were different and did not allow such a calculation. However, according to the information from Milaap team, pediatric liver transplants and cancer care constituted majority of the fundraisers for children’s health problems.

This clearly suggests the following two things to begin with:

  1. Treatment of congenital anomalies and medical treatment of children requires fundraising, as there seems to be no other way for several such children and their families.
  2. Contribution of the State, i.e. the Government is barely fulfilling needs of such families and children. And the State needs to do something drastic to change this scenario for children who require urgent intervention.

The ongoing questions remain: Who would be bearing such costs? And if all these costs are to be borne by parents, how will they afford this? And even if they can afford one such surgery, what about those who require more than one surgery or ongoing treatment requiring huge investments of time, energy, and money. What kind of support is available in India for such children and their parents?

The role of State

According to the website of National Health Mission (by the Govt. of India), Rashtriya Bal Swasthya Karyakram (RBSK) is in place with the aim of early identification and early intervention for children from birth to 18 years to cover 4 ‘D’s viz. Defects at birth, Deficiencies, Diseases, Development delays including disability[iii]. This is a start but not enough. As of now, there appears to be no scheme/program/service that covers all children with congenital anomalies and/or complex medical health problems. What will happen to such children in absence of treatment, as well as human and financial support? This is not too difficult to imagine. Such children will not survive. And even if they do, their quality of life is likely to be such that they will not be able to enjoy all the rights and opportunities that should have been theirs.

The spaces for support for such children and families barely exist in India. Need is huge but examples of such spaces are few. On the other hand, we have list of organizations working in other countries on such issues. For example, look at this: https://www.cdc.gov/ncbddd/birthdefects/families-support.html

Elsewhere, there are also advocacy groups such as Little Lobbyists (Check them out here: https://littlelobbyists.org/ ) who are working towards protecting and expanding rights of children with complex medical needs and disabilities. Although India has a strong advocacy groups for persons with disabilities, the focus on children with various congenital anomalies and complex medical needs is yet not receiving adequate attention. There is change for some children but not all.

For how long can we let children die because of lack of access to health care and treatment or lack of money? While each of us has to become more aware of needs of such families, the role of State cannot be ignored. Children with pre-existing conditions also need to be covered by insurance. Else, I believe that the Govt. should cover most of the costs- not just for families below poverty line but also for various other families that will be pushed towards poverty and financial distress as they try to manage the cost of care and treatment.

The State has to protect such children from being eliminated. Overlooking their urgent needs does amount to death, low quality of life, and violation of rights. Each child has right to a present and a future where he/she is protected and has access to opportunities and resources that help him/her evolve.

We are not doing enough. We need to.

 

Acknowledgements: I thank Milaap team for sharing the data in the form that they could. Some of the crowd funding platforms did not respond to the request for data. I hope they do so in future.

I hope all the crowd funding platforms realize that they can be even stronger drivers for changing our country through the data that they maintain and how they maintain it.

 

[i] See WHO page at: http://www.who.int/news-room/fact-sheets/detail/congenital-anomalies

[ii] The paper is available at: https://bmcpediatr.biomedcentral.com/articles/10.1186/s12887-018-1149-0

[iii] http://nhm.gov.in/nrhm-components/rmnch-a/child-health-immunization/rashtriya-bal-swasthya-karyakram-rbsk/background.html

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Hospitals and Caregivers: Learning to behave with more sensitivity

You can see three photos here. The first one is from the time when my son was 2.5 months old and was recovering at the hospital from an open heart surgery. The second one is from a small surgery for his hand. He is walking around in the corridor because sitting in room becomes boring after a point. The third photo is the one in the room near OT. He was taken from here by me into the OT for his latest surgery (and I left OT as soon as he was sedated). As we kept waiting to go into the OT, my son was entertained through these paper boats, house and plane. One made by me and other by nurses. That blue thing was a glove turned into a balloon with a smiley on it. 

I never had to stay in a Hospital till the time came for my delivery. And after that I have visited hospitals countless times as my son (who is now 2 years 7 months old) required follow ups with different kinds of doctors for the conditions that he was born with. He has had to undergo surgery four times under general anaesthesia (one more waiting to be scheduled). And hence, I have lived with my son in three hospitals (all private ones in Delhi- St. Stephen’s Hospital, Fortis Escorts, Apollo Hospital, Sarita Vihar ) for these surgeries (each condition required a different surgeon). And each experience has given me an insight into how health institutions deal with people and how people deal with each other as they come with their own pains and problems. Although there have been positive experiences on both fronts, I have felt disappointed as well on some occasions.

In the last few days, I kept wondering what has happened to our society? Can we really not see the pains and problems of others around us even in the middle of a hospital- which is actually a home of pain, problems as well as recovery? This was not the first time that we had taken a semi private room. But this was definitely the first time that I saw the other families in the same room keeping the TV on for several hours and that too on a high volume. Thankfully, my son would fall asleep anyway as he was still recovering from the surgery and pain. Once, I had to actually request the other family to either switch it off or keep it on mute. It was at 11 o’clock at night! I was surprised that I had to do this. Have people really started thinking of private hospitals as hotels? Or it is about the kind of people who opt of these semi private or private rooms in such hospitals? My experience living in the general ward in the same hospital was far far better as disturbances were definitely far less. And while I say this, please know that living in hospitals is not really easy. Because you can’t follow your own schedule. You need to sleep and get up according to needs of the patient and routine of the hospital. So helping the child take his midnight medicine or diaper change (to prevent infection)  because he may cry more with a non-parent caregiver, is just one of the things you do. Bed sheets get changed early morning. And its generally the time when you would prefer to sleep. But delaying work of housekeeping staff is not the best thing to do. Keeping everything clean is also a way of preventing infections.

The other thing that surprises me is the fact that caregivers/attendants of children (who may have just had a surgery) are not even able to tell the visitors to not come in huge numbers or just not come for initial one or two days (or not at all). Every visitor brings with them a chance for infection. Even when they may not be sick, I do get worried when people cough in the same room. Maybe I am too cautious because my son has had 4 surgeries and we have tried doing everything we could before and after surgery to prevent any infection. An infection and even a mild fever can lead to postponement of surgery, delay the recovery, or cause unnecessary complications. 

So here are some things that I request everyone who is going to visit those at hospitals as well as those who are caring for someone at the hospital:

  1. As a visitor, please know whose need are you fulfilling when you go? If it is only for your peace of mind but does not serve much purpose for the caregivers, avoid rushing to the hospital, especially on the first two days post surgery.
  2. For parents of an infant or a young child, the day of surgery and the day after it are the most tiring ones. If surgery is invasive and has taken place under general anaesthesia, it means that the child has been kept without food and water for few hours (sometime it extends to 8 or 12 hours when surgeries get delayed!). So managing the child during this time is not at all easy. An adult can still probably be helped to understand why they have been kept hungry, but how easily would you be able to explain the same to a child? A child who has been loved and cared for since birth, has not been kept hungry or thirsty by parents/family.. how will that baby understand why the parents are not caring for him at that moment and why is he feeling low in energy or upset!? You can’t really help the child understand answers to these questions. So all that parents can do, is make the child comfortable as much as they can. Before this, in case you are not aware, the child has also undergone the horror and pain of getting the cannula fixed on one of the hands. Again during that process, the child must have looked at the parent in pain and with helpless and requesting eyes and cries, that he should be saved from this pain… but as a parent, one would have just tried to tell the child that this needs to be done. Then comes the waiting time while the surgery is on. And then comes the next hard part. The child is sent to the recovery room and as he is regaining consciousness, the parent (generally a mother) is asked to be there for the child. As the effect of anaesthesia is wearing off and pain of surgery becomes evident, the child feels disoriented, cries, and expresses helplessness because he, in his mother’s lap or on her shoulder, was obviously not expecting to be in so much pain and in such a different room/place.  I have sat in the recovery room sometimes for a whole hour with my son in my lap or shoulder comforting him. It is tiring. He would cry, protest and fall asleep. And this cycle would continue in the recovery room at least 4 or 5 times as I sit without changing my posture or position as much as possible. So, when we reach the room/ward post surgery, there is no energy left to attend to visitors. And within a few hours of surgery, when visitors come without even informing (and come for peace of their mind, not because they wanted to help), it takes away some more of the already diminished energy of the parent. Next one or two days post surgery (unless the child is kept sedated to manage his pain and recovery), the parents are not likely to get any sound sleep because you have to comfort the child so often. Those who have seen their children sick and in pain, can magnify everything that they experience and their child experiences  by a few times. That is what we go through. So unless, parents of the admitted child need your help (and assertive parents like me do seek help when needed), do avoid visiting on the first two three days. It is okay to ask the caregivers if they need help. And of course, catching up with others and changes in every day conversations do help caregivers cope. So like I said earlier, be aware as to whose need are you fulfilling.
  3. If you are visiting, follow visiting hours although you may not know whether even that is a good time for the family.
  4. If the hospital has a process where you can visit using some registration process, please use that. Try not to burden the family by hoping that they would facilitate your visit through their own attendant cards. When you are doing that, you are taking the caregiver away from the patient. And patient may need the presence of caregivers much more than your presence.
  5. As a visitor, you don’t need to sit there for two hours just because the visiting time is so long. A shorter visit into the room would be much better for everyone including the other patients. The caregiver should also be concerned about this. More conversations can take place in the canteen/cafeteria rather that in the room.
  6. As a caregiver of a child at the hospital, you may feel bored or tired. And you may also be concerned that the child is getting bored. Watching TV or Videos on Phone on loud volume is not the answer for this. You are making life difficult for others who need to recover. Be sensitive to the needs of others. It is a shared space even when you think you deserve everything because you have paid for it! Use other options to entertain yourself and the child, and Vedios on mobile should be on low volume and TV ideally on mute. If it is possible, you can also take the child out on wheelchair or in your lap. And since you need breaks as well, going out of the room and taking help of someone else to care for the child for sometime, is okay.

And here are some of my observations regarding services as a parent of a young boy with multiple health needs:

  1. While in-patient (when the child is admitted in the hospital) scenario provides more support to the caregiver (mother on most occasions), the same is generally not true for OPDs. We have to manage the child with minimal resources. This means, every visit to OPD means that among several other things, I carry cooked food for my son, as well as material for his recreation if he needs. And this eventually means, I carry my son as well as the heavy bag (and sometimes I would be running after him along with my bag!)!
  2. Even when there are play areas in hospitals, these are not necessarily located near the OPD area and generally too small to be used or with hardly any resources (of course, in some/most hospitals, these may not even exist!). It is almost as if they exist for some formality to be completed and not really for benefit of children!
  3. Since a child will get uncomfortable and cranky when sleepy or hungry (and you have to wait for your turn in the OPD as well), one does need more space for child to move around or some space for children to rest/sleep in the OPD areas. Most OPD areas are not really child friendly in this sense.
  4. Going to bathroom is difficult with the child if the bathrooms are not clean or not big enough.
  5. Above aspects and several other factors necessitate that I take another adult along to manage my son. And why should this happen? How many parents can go on taking leaves for managing health needs of their children? I have been fairly independent with my son as I drive him around (using car seat) and take him alone to several places. But when it comes to a health service, it is easiest to take him only to the paediatrician’s clinic which is nearby. Hospital visits alone (and I have gone for them) are always tough.
  6. If you are admitted at the hospital, you really can’t leave till you get the discharge summary. Now, this obviously requires someone writing it, someone checking it, and then someone signing it. I have faced delays sometimes just because the discharge summary is either not ready or not signed. That piece of paper is so important!

Most of above thoughts are related to OPDs, because that is where managing everything alone is tough. Managing a child post surgery is also not easy of course. But there my discomfort is more with other caregivers on some occasions. Hospital staff is generally (and has to be) supportive for patients and caregivers, especially with a child so young. However, every small discomfort adds up for parents who have to go for endless visits/follow ups to the hospitals (I cannot imagine what must be going on in the other hospitals!).

These are not the things that we have to bear only once or twice. After a point, each visit becomes a burden because systems remain the same while your energy is taken away by so many things. And I won’t be surprised if some or many parents  give up and stop seeking treatment for their children. It should not happen but it does. After all, for how long will you be able to bear all expenses, and spend all that energy, and miss all those work days and continue seeking treatment for things that may not necessary change completely? And as I said, it should not happen. But it may. And it does. Such circumstances not only push children towards death, continuing low quality of life but also push families into debts and poverty. The State (the Govt.) has an important role to play here. 

Did you ever wonder about so many crowdfunding campaigns that exist for children with so many health problems that they are often born with? Here is a very important aspect for parents of children with congenital problems: most of these conditions are not covered in the insurance. So, even if you are lucky to have an insurance for family, it serves no purpose if insurance can’t pay a major chunk of the money that parents spend while take number of days off from work (of course, it also serves no purpose when you don’t have doctors and other professionals around to help with treatment for the conditions!). Not everyone is eligible for accessing Govt. schemes such as RBSK. Although I would urge you to get such schemes used more often for those in need. There is definitely a lot more needed to support such children and families.

Last but not the least, donate blood and become an organ donor. Tell your families that they should donate what can be donated when you are no more.

They are not mad!: Those who burn things & attack children, who support hatred, who spread the myth of love jihad, who kill in name of caste & religion ….

 

karni sena protest
One of the recent protests in India (Image source:npr.org)          

 

 

It is not rare that someone around us would perform an act which would seem irrational and so unreasonable that we wonder, ‘what was going on their mind when they did that!?’ And it is also not rare that , often, we would label those irrational and unreasonable acts as signs of madness, lunacy, insanity (whatever word you prefer). But all these terms are also often used for people with mental illness.

Do you really think that anything and everything can come under the purview of mental illness? Do you think that when people work against humanity, and kill in the name of religion and caste, the sole reason for that could be mental illness? Even in our need to find simple answers for complex problems, can everything be linked with mental health problems of people in this country or the world?

If someone does not even want to recognise the other as a human being worthy of respect and rights, then do you really think that the problem lies with some chemical imbalance in that person’s brain? When illogical/mythical and fake news is spread and people seem to believe firmly in those (to the point of seeming delusional), do you really think that the diagnosis of schizophrenia would be the correct way to understand the solution?

NO! In fact, when you apply such assumptions and labels  of madness to those who work against humanity, you are only making things difficult for people with mental illness. You are, in fact, further propagating the myth that people with mental illness are unpredictable, violent and always irrational. By doing this, you are promoting exclusion and stigma associated with people with mental illness.

I urge you to differentiate between

Group 1: people with mental illness who are in fact persons with disability (as per India’s law) and need access to entitlements, rights and services like any other person.

AND

Group 2: people who become violent , unreasonable and work with the objective of harming others who may be different from them (they are not mad!); people who are so fixed on building one nation without respective diversity (don’t call them delusional or with OCD!); people who believe so much in their opinions that they don’t want to see the evidence against their opinions.

The Group 2 is not a homogenous group just as Group 1 is not. But I think that Group 2 probably enjoys a lot more space and protection in our country (and probably across the world) as compared with Group 1.

You can try to challenge your assumptions related to mental illness by reading here or here.

And as I said before, those who burn things & attack children, who support hatred, who spread the myth of love jihad, who kill in name of caste & religion- the reason that these people do such things is not related to mental illness (although some of them might have because anyone can have mental illness). Please don’t use the terms  ‘madness, lunacy, insanity’ loosely so that you don’t promote stigma that people with mental illness already face. You need to understand a lot more about complex problems and not simplify everything to a diagnosis.

It is a journey, which completes us in many ways….

Socks don't match!
Dear Son,
May your laughter remain full of life, honesty, and fun always..
May your smile remain as giving and charming as it is today…
May the sparkle in your eyes be there everyday….
May you always have reasons to express joy…
May you see your family around everyday…
May you always find something to do…
May you always find ways to express your thoughts and expectations…
May you never run out of people who can be trusted and those who can help you when needed….
May you always manage to balance your urge to be independent and the need to seek help …
May you always find courage to tell people when you feel tired and lonely…
May your cautious but determined journey continues towards everything you want…
May you always find your destination or your way back whenever you wander off…
May you always find your way back to hope…
May you discover millions of other things….
May you embrace your challenges and limitations with the same ease as you embrace us…..
May you inspire others to be like you just as you learn from them…
May we always have you…..
May you always remember that there were times you thought of us as ‘funny’…
May you always remember that you are loved…
I hope for all this even though I know
That as you grow…things will change.
We may seem boring and unavailable.
We may confuse you with our expectations.
We may not find time to smile at you or be with you.
You may want us to leave you alone at times.
We may not understand your decisions.
We may not be able to explain everything.
And yet I hope, may we always find ways to love, value, and understand each other.
It is a journey, which completes us in many ways.
And may all of us grow together.
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Choose to contribute! Participate in Giving!

giving-is-good
Source: http://www.specialatbrooks.com/giving/

 

As a social work professional, it is not surprising when someone calls up or contacts me to ask about different organisations working in different fields. Sometimes, it is about donating money, sometimes about donating surplus from home and sometimes it is about volunteering, and sometimes it is about seeking help from specific organziations.

Let me focus on those who want to contribute money or/and volunteer their time or skills. Concerns about ‘whether my money/resources would be used properly’ is among the top ones I think. So, here is an opportunity for you  (although not the first or the last one!). Check out various organisations who are associated with fundraising event Airtel Delhi Half Marathon 2017 . Choose which ones would you like to support and do the needful. You will find the list of participating organisations here.

Basically, I am trying to encourage you to take another step and read up about the organizations who are doing good work. Of course, there are many more out there (who are not participating in this event) and you would hopefully get to know them too.

I would suggest- Don’t wait for your special days or birthdays to plan your contribution. You can do your bit anytime..starting now. Give! and Give back to society!

I  support AADI and Child Heart Foundation. 

You too…have a look and get to know more!

Thank you!

 

09d9214f9da8774c713ef4bdb2548aec
Source: https://www.pinterest.com/pin/70861394120184564/

 

50 years of Department of Social Work, JMI (India)

This Short film has been created by the Department of Social Work, Jamia Millia Islamia as part of its Golden Jubilee Year celebrations. In 2017, The Department turned 50! Along with sharings by H.Y. Siddiqui Sir, Sajid Sir, Anjali Gandhi Mam, Kohli Sir, Gandhi Sir, Manoj Jha Sir, and other present and past faculty members of the Department, look out for MSW Batch 2002 rural camp photo at 08:20!