I don’t know who to blame Pierre Mertens, July 2016

Typhoon Haiyan on the Philippines served as a wake-up call for Child-Help to provide money to help our children in this densely populated country. It turned out to be an extensive search to find the right partners. But now, the cards are good to make a difference also here. I am joining Charles Howard from the American 'CURE Hydrocephalus' who is visiting this archipelago from Vietnam. Philippe Aldana, a Filipino born neurosurgeon, lives and works in the United States. During our project in Mbale in Uganda he was trained in Endoscopic Third Ventriculostomy with Choroid Plexus Cauterization (ETV/CPC). This is the endoscopic alternative for shunting during which a camera is used to make a cavity in the brain, in the bottom of the third ventricle, to allow excess water to be absorbed. Choroid Plexus Cauterization involves removal of a part of the water producing tissue. This can be done more completely with a flexible scope since it allows for the surgeon to also work behind the corners.

Philippe now wants to introduce these techniques in his country of origin. Therefore he founded the Neurosurgery Outreach Foundation in the US. Thus the main goal of the Philippine Hydrocephalus Program is to promote ETC/CPC in the Philippines. Charles, with whom we cooperated in many countries, hopes that Child-Help can contribute to ensure better lifelong treatment and care after surgery. As a father of a daughter with spina bifida, I personally believe that qualitative care programs require active involvement of parents. In the end it is about them and they can tell us how caretaking really takes place. Through Facebook, aided and limited by Google translate, I have come into contact with many Filipino parents. They are posting pictures and videos of their babies showing ever increasing sizes of the head, waiting for surgery. Slender bodies dangle from basketball sized heads in which the Asian eyes disappear like astray hyphens between excessively long words. These hard impressions are enforced by the loving look in the eyes of the desperate young mothers.

Godslittlefighters has a Facebook page which Yanie is using to put up a fight to finally get treatment for these children. The images of these children are a shocking illustration that the health system in this country is not working for them. Adequate aid comes way too late. Why did they not receive the simple shunt treatment, costing only 47€, in time? That is what I want to find out. Child-Help immediately sent them shunts. However, the delivery went tantalizingly slow and for weeks Facebook made me a daily witness of the ever growing baby heads next to their mothers waiting for a postal delivery. When the package finally arrived, the surgeon doubted the quality of the shunt and postponed the surgery once more. History repeats itself. When I first heard about the Chhabra shunt at a congress in Japan in the nineties, no one was willing to use it. Surgeons in developing countries argued that their children were equally important to American or European children. That was the reason for me to ask Dr. Warf to assess the Chhabra shunt's quality. The doctor compared the Chhabra shunt with the expensive American Codman shunt and found there to be no significant differences in the results of both shunts. Later it was discovered that shunt dealers were paying a multiple of the price of a Chhabra shunt to surgeons under the table to be able to sell their shunts. With hundreds of thousands of children each year developing hydrocephalus, we have to make an effort to provide care that is

Charles Howard & Pierre Mertens

Why are these children not receiving the treatment they need?

affordable for the patient. This because today, there are many obstacles between the suffering child and the required healthcare. Together with Filipino parents, I want to identify these obstacles. I already found three local organisations willing to offer support: volunteer Yanie’s Godslittlefighters (GLF), nurse Jem Lino’s Hydrocephalus Foundation and ANAK foundation, an organisation for spina bifida led by urologist Dave Bolong. I will meet all three of aforementioned people since Philippe’s program will be mainly about neurosurgery. Surgery opens the door to a worthy life, but before and after that door there is the need for towering amounts of care. I flew with Emirates to Cebu, with a stopover in Dubai. In Dubai I go to gate A5 well in time, a Japanese flight is boarding while Cebu is already indicated on the signs. The ground crew requests me to wait, and when I show my boarding pass for the third time it turns out that my flight to Cebu had left from gate A6. After paying a fine I am able to get the next flight, 24 hours later. When I go to complain I was told everything is my own fault. The gate is closed, luggage is removed from the airplane. No announcements, no gate change was communicated. What had gone wrong here? Gate A5, I asked three times and was requested to wait. According to the supervisor’s computer screen nothing went wrong. Who am I to blame? I started to doubt and got mad at myself for slavishly following the ground crew’s orders… . During the 24 hours in the artificial city of Dubai I made a touristic trip to a shopping mall with a view on the highest skyscraper in the world. Commerce and profit, consumerism and sales as highest live goal towards happiness. This stands in strong contrast to the mission to the Philippines, during which poverty is likely to be the biggest barrier to provide treatment to disabled children

In Cebu, the oldest city in the Philippines, Dr. Philippe Aldana is organizing a two day workshop in the governmental hospital VSMMC during which he will promote EVT and CPC. He will also perform some child surgeries there. Therefore Storz has sent a representative from India and provided a flexible scope. Due to the Emirates debacle I have had to postpone our meeting and I requested if she could meet me at the hospital. She was going to be there anyway since she wanted to bring two patients to the hospital that morning. Together with her uncle she drops the patients at 6 in the morning. She gets to attend the lectures. I find this important since I want the parents to be represented here in one way or the other.

The three foreign organisations introduce themselves. Charles for CURE, Philippe for Neurosurgical outreach, and I will tell what Child-Help stands for. I illustrated my slideshow with the photos I received from the Filipino parents through Facebook. Loving young mothers next to their babies with unlikely large heads. I focus on the ample barriers that result in these children not receiving treatment or receiving it too late. I also invite doctors to search for the real reasons why parents seek medical

attention for their children’s condition too late. I use an ice cream as a metaphor. This image occurred to me in the period that everything went wrong in Dar Es Salaam and I got the impression that in Tanzania nothing still functions. In the jammed traffic I saw young boys sell ice cold water in the kilometres long queues, and that under a burning 40̊ C hot sun. And they sell well. If the bags of water are not sweating from condensation than they do not sell, simple as that. The ice cream salesmen know this too. Their ice cream needs to be cold, but not too cold; they have to be available and affordable. This metaphorically also counts for the health care system. Healthy patients stay away when the quality is insufficient, inaccessible or unaffordable. And here also neurosurgeons have a reasonability. When their services are too expensive they close their doors for the majority of their potential patients.

Dr. & Mrs. Aldana donate medical equipment

The three organisations introduce themselves

Dr. Philippe Aldana also underlines the importance of follow up. He tells the neurosurgeons, ‘You are probably giving them the most important day of their life, but after that day a long life of care only just starts.’ He also calls for them to take their responsibility as a civilian and to draw attention to and assess the difficult access to care. While the surgeons are performing or attending an ETV/CPC, Charles, Yanie and me get a tour of the hospital. A new wing for neurosurgery is being constructed. On the wall there is a newly honoured picture of Philippe’s recently deceased father. He was a pioneer for neurosurgery in this city. There are only four children with hydrocephalus in the entire hospital. Three with enormous heads and clear signs of overpressure and one waiting for an external drain. I ask why they are not undergoing surgery. One is waiting for a scan, two others have lung problems. A group photo is organized with the entire staff of the department and two mothers with their battered children are asked to join. In the neonatology department there are two babies who were born with spina bifida in the hospital. Their beds are moved forward for taking a photo.

In the afternoon I am invited to visit Yanie’s shelter. I do not know what to imagine it will be like. Yanie asks me to wait for her two mothers who will ride with us. They are in the hospital cafeteria waiting for lab results. Four families with children with spina bifida and/or hydrocephalus together at the table, that brings solidarity. While Yanie collects the lab results and pays the bills they are telling their stories. It is nice to see how these parents are fighting for their children, and also the fathers are very involved in the care taking. The latter is not always true for Africa. Two mothers, two children and Yanie on the backseat of a small Nissan, the uncle and me in the front.

The small house Yanie is renting is more than an hour’s drive away from the hospital. She shares her cosy but very modest house with a single mother and her child, an abandoned six year old boy, and the two families. They all pay nothing for the rent, even more: Yanie helps with transportation, food and medical expenses. At night the parents and their children sleep on the floor in the living area. Next to her house Yanie has built something to house a homeless family. It looks like a creaky cupboard leaning against

her house. The building hosted a family of which the parents where drug addicts. The parents had

departed and left their child with Yanie. 'What are you going to do when another family arrives here?’, I ask. 'Then we will make space, what else can I do’, Yanie replies. She shows that a house is never too small when you are large hearted. I am moved by so much mercifulness.

A group photo with staff and parents was organized

Parents sitting together at the table brings solidarity.|

Godslittlefighters are welcome in Yanie’s house.

At Manila airport we are picked up by Ronnie, the candidate surgeon who want to go to Mbale for the EVT/CPC training. He is an assistant neurosurgeon of Dr. Lesgaspi, director of the Philippine General Hospital (PGH). Ronnie’s dad is our driver, but he does not know yet about our plans for Africa and Ronnie wants to provisionally keep it that way. Africa doesn’t have a good reputation here. Manila is a city with more than 12 million inhabitants and skyscrapers represent the economic interest of foreign investors. But the population remains penniless and is hampered in her growth by armed gangs and earthquakes. My first appointment is with Dr. Bolong from the Manila Spina Bifida organisation. I contacted him by email and his reply was promising. An organisation by and for parents with a continence program. We agreed that I would call him from the airport but he did not answer his phone. I texted him with my Filipino number and yet he did not answer until late in the evening. He had forgotten the appointment and the only option to still talk to him would be in his office in the hospital from the Santa Tomas University. We had a long conversation and I could feel his enthusiasm about setting something up together. Dr. Lesgaspi recently became the PGH’s director. He picks us up at the hotel the next day and takes us to his academic hospital. The building looks neglected but there are plans for renovation. In

his office he has a beautiful art collection from artist who paid or thanked him for his neurosurgery with the art. I like him, he wants to bring change yet knows that that takes time and diplomacy in a governmental hospital.

In the PGH there are relatively few children with spina bifida and/or hydrocephalus. Perhaps the ice cream is still too expensive even here, while in a governmental hospital everything ought to be free. There is an open difference between private patients and others that receive state help. The latter are called ‘charity patients’, we saw people lining up at the 'Charity Pharmacy' and the 'Charity bills'. Those words are written in large letters above the doors. It shocks me because I consider care in a governmental hospital a human right. Dr. Lesgaspi thanks me for drawing this to his attention and says that they need to come up with a different name for this. The few children that are in there are waiting for a shunt, but there are always reasons not to perform surgery. One has to wait for a scan, the other is malnourished or has lung infection. The hospital’s scanner appears to be broken today. I ask why they are not using ultrasound, as long as the child’s fontanel has

not closed it can give a good view on the situation and it is a lot cheaper. I explain to them that the requirement for a scan is often a reason for many children not to be treated. Parents need to pay for it. Also in the governmental hospital where everything ought to be free. They also have to pay the 300 dollar shunt. Their invoice quickly rises: lab costs, medication,… . If they cannot pay for this then treatment stops here.

1 Yanie in front of her structure for the homeless.

Tour in the PGH, Dr. Aldana gives advice.

None of the two children with spina bifida are catheterized. CIC or Clean Intermitted Catheterisation means emptying the bladder using a tube. It is the only way to make sure the paralysed bladder is completely empty and that way the kidneys can be protected. This preventive treatment is almost free of costs and should be initiated at birth. Almost all children with spina bifida have intact kidneys at birth. Forty percent suffers completely preventable kidney damage at age one. Dr. Lesgaspi promises to initiate a multidisciplinary team and to also involve the urologist. He also considers applying abdominal ultrasound an option. After the brief tour, Philippe gives an extensive lecture about EVT/CPC, Charles and I present our organisations as we did in Cebu. I plea for accessible healthcare and offer to deliver the Chhabra shunt free of cost to all children who need one. The shunt can no longer be an alibi for not providing treatment. Charles investigates which person is the best candidate for an ETV/CPC training in Mbale. His CURE hospital can only provide a limited number of courses per year. Who has the capacity to make the largest difference for our country? Who will be able to also train other surgeons in the technique? Many elements are in play, with questions such as, ‘Does the hospital management stand behind that man?’ ‘Will he be able to serve a sufficient number of patients and will the EVT ice cream be affordable?’. ‘Does the hospital have sufficient attention for follow-up and aftercare?’. Charles, Philippe and I attempt to assess these things, but how it will really work out will only be known when we talk to the parents. Charles has built up a lot of experience during the years. Already 26 surgeons from 18 different countries have been trained at the facility. But still it remains a guess. Not everyone shows you their true colours. It is good to, with three like-minded people from very different backgrounds, come together to look for what is possible here and what is not. Philippe has been able to make an appointment with Dr. Bermejo from UNICEF. After safety checks transcending those you’ll find in an airport we meet a very young-looking food and health expert. UNICEF has expanded her portfolio by including disability and rehabilitation and is working towards a plan to finance rehabilitation centres through the government. Considerable budgets are being assigned to certain disabilities. I ask whether shunts and incontinence material is included. He does not know whether spina bifida and hydrocephalus are included in their list of disabilities, but will check it later. I suggest to help with making a list of the essentials regarding these handicaps. They probably use a WHO list that does not start from diagnoses but from disabilities and what is needed for them. Therefore it is of crucial importance to get the disabilities from our target group included in this list. Shunting and incontinence management are of vital importance for our children but they risk falling of the list because it is classified as medicine. This way our target group falls between two stools again. Philippe ends the conversation diplomatically because we have to hurry to get to our appointment with the Hydrocephalus Foundation in time. In the lobby of a five star hotel we meet Mr. Raymondo and nurse Jem. He is a member of de board of directors and a contractor for public building projects. He says that the organisation is in financial trouble because

their chairman, another American doctor with Filipino roots, deceased two years ago. Together with him many donations from The United States disappeared. Many of the members of the board of directors currently have to consult their personal capital. The Hydrocephalus Foundation has two rooms at their disposal free of costs, for their weekly clinic. Nurse Jem works fulltime for the organisation, all the others are

Some children respond to nothing

Mr. Raymond and nurse Jem from the HF.

volunteers. He is happy to hear about the Chhabra shunt and is prepared to cooperate. Parents that report to them are helped, but they have to come to them themselves. Nurse Jem delivers the shunt straight to the hospital to avoid the shunt being sold. The PGH refuses to treat children with a head circumference over 60 centimetres. ‘We do not refuse that’, he says, ‘but the costs can run high’. The Chhabra shunt would solve a lot. I give him a couple of shunts and we agree that the foundation can order more.

The next day I can attend their hydrocephalus clinic and when I arrive there are already around ten parents with children waiting in line. Unfortunately they all have terribly large heads. Dr. Llaguno, a retired neurosurgeon, who worked in the US for years, is doing free consultations. The foundation has an agreement with a private corporation next door who conducts high quality scans at an affordable rate. They pay for the scan costs. What a luxury, within an hour the doctor has the scan and he can advise the parents and give referrals. Nurse Jem is involved in this all. She writes referral letters, keeps track of personal files and follows up patients.

The parents come here because they are made aware through Facebook that all treatment here is free, but they have to be able to get to the hospital. A number of children I know already from Facebook but most people are here for the first time. Dr. Llaguno is a man with ample experience from the United States and he wants to do something back for his home country. I suggest to bring him into contact with Dr. Philippe Aldana. When he hears my background and story he gets even more interested. I tell him about the Chhabra shunt and Dr. Aldana's from CURE Hydrocephalus EVT/CPC program. He currently uses only medium pressure shunts. I have a high pressure shunt with me and suggest opening it so he can get to know the product. We read the leaflet together and I give him Dr. Warf’s article in which he compares the Chhabra to the Codman shunt. ‘You are saving our foundation’, he says, ‘with this shunt we can continue our work’. He explains that the foundation, before she got into financial problems, wanted to rent a shelter for parents. A communal house, I like the sound of that. Dr. Llaguno tries to call the chairman, but he appears to be unreachable. Dr. Llaguno is from Batac in the northwest part of the island in one of the provinces. There he works in a hospital where he is training a surgeon in the placement of shunts. The hospital serves the entire northern part of the island, although that requires crossing two mountain ranges for the people from the northeast. He draws the island’s map and says, 'They have a paediatrician there who can be deployed for a local spina bifida program. I was there just yesterday and this evening I need to return for an urgency that could not wait until my next visit.’ The hospital in Batac interests me. I think about Rwanda where nurse Uta’s hospital, far away from the academic hospitals, sees and treats the majority of patients. I give him my five remaining shunts as a donation to the Batac hospital and I promise to provide him the documents needed for ordering additional shunts and reporting about the shunts. 'Show us some patients' he says. In the second room nurse Jem is measuring the head circumferences, looking up files or opening up new ones. Dr. Llaguno introduces himself to the parents, shakes their hands and asks them to put their children on the examination table. He speaks

Dr. Llaguno does free consultations, refers and advices

Scans are immediately conducted

openly and knows the limitations of the social health system. Where he is clinically unsure he requests a scan. He also refuses scans when he feels it is useless in that case. It costs a lot of money, and the foundation doesn’t have too much of that. Precious is 10 months old and was born with spina bifida. She received a shunt but unfortunately way too late. Her head has increased in size and the back of her head is as soft as a pillow. She is here for a check-up on her hydrocephaly. Her head circumference has reduced by ten centimetres and since the shunt Precious can swallow again independently. The foundation does not focus on spina bifida and therefore I promise to bring her into contact with Dr. Bolong’s spina bifida foundation to ensure an immediate start. According to Dr. Llaguno the shunt is working properly and he is happy with Dr. Bolong’s option. It is useless to save a child with spina bifida by closing the back and placing the shunt and then lose it to

preventable kidney complications. ‘Josua is 9 months old’, say mother Kristi and papa Carl. Josua has a head circumference of 93 cm. While the child is very skinny its weight is 15 kg. Josua was also referred to the JRMC but sent back home because they did not want to perform surgery because there is a pressure wound both on the left and the right. The wounds have to heal before surgery is performed, but that is an unfair battle. The head keeps increasing in size making the skin vulnerable and paper thin, too thin to heal. Dr.

Llaguno says that the child has to be admitted to temporarily prevent further growth of the head with daily ‘ventricular taps’. He explains to the parents that with a thin needle water can be drained, but it has to happen sterile and daily. But the JRMC did not want to do this. I feel revolt. Josua and these young parents are fighting a losing battle. I feel helpless and call Dr. Lesgaspi, but my mobile phone does not work anymore, I can only send text messages. He does not respond immediately and I ask Dr. Llaguno what they are to do. Doing nothing is not an option. The head keeps expanding. He crafted a ring on which the child can sleep in a way that relieves pressure from the

wound.

They take the handmade ring from the doctor but say that carrying Josua works best. Around one of the wounds a pink circle of scar tissue is forming, but I remember that when our daughter Liesje had a similar wound, when the crust fell off it revealed a hole. I swallow and ask and feel powerless. The only thing I can do is stay with them and not run away. I ask if I can hold Josua for a while. For a few seconds I can feel the weight both parents carry each in turn day and night, hoping the wounds will heal. Josua is crying with this stranger and the thin Kristi takes him on her lap and puts him at one of her small breast. I have never been witness to such a devouring image of maternal love. In two weeks they have an appointment at the JRMC, but healing the wound is going to take much longer. These parents went to the hospital when Josua was one month old. By then the head already measured 46cm. However, they were sent home because Josua had an infection. Now his head has doubled in size.

Mothers wait for a free consultation at the Hydrocephalus Foundation

Josua has a cranial circumference of 96 cm

These parents are fighting for their child, they keep hoping for help

I urged Dr. Llaguno to write a letter that the parents can take with them to push the JRMC to actually do something. Dr. Llaguno looks up and says, ‘I cannot change the system,’ but he does write a note, just to please me. I tell the parents that I sent a text message to the director of the PGH and that I hope he’ll respond soon. I express my appreciation for them, ‘You are great parents and what is done to you is not fair.’ The young couple gets tears in their eyes and Carl says ‘I don’t know who to blame for this.’ It is the same feeling that I had at the Emirates counter, only here it is about the survival of the parents' only child. Carl thanks me for what I am trying to do, ‘Good that you came here Mister Pierre, we really need your help here.’ Also the next two children have gigantic heads. One of them still reacts properly but the other child has death’s shadow cast over it. The child is malnourished and shows no physical reactions. Both children are scanned to detect whether they still have living brain tissue. After the consultation I sit together with the parents of Godslittlefighters.

They have come here to see me and have presents with them for Philippe, Charles and me. On the way back to the hotel Dr. Legaspi calls, he assures me that also the children with large heads are now welcome in the PGH and that Josua may enlist with his assistant Ronnie. I text, Facebook and WhatsApp all of this hoping that something in this slow machine moves. Josua’s parents went to the PHG the next day where palliative care was suggested. This is an understandable option since it is not certain that Josua will survive the surgery. When the pressure in such a large head suddenly decreases there is the risk of cerebral haemorrhage. If Josua survives the surgery he will be severely disabled for the rest of his life. For the first time I use Uber and I am picked up by a chatty single mother. Our interaction turns into an amusing conversation and when I tell her about our work she says she sometimes sees the children with large heads on television and that she then changes the channel. That is what probably almost everyone does. Change channel, turn the knob. But that is exactly the reason why these wrong situations exist. Each person has a responsibility in this matter. Also this sympathetic single mother.

The private hospital in the old Spanish Santa Tomas hospital comprises a newly built wing where Dr. Bolong sees his patients. The consultations are still being held and I need to wait outside. After a while his secretary and a mother of a 34 year old son with spina bifida lead me to the cafeteria. The mother has been active in the organisation from the very beginning. They have 300 members, all patients of Dr. Bolong. Probably the poorest people do not come here. Her

son has developed mental retardation due to the many shunting procedures. He is a wheelchair user

and can catheterise through the stomach after surgery. Dr. Bolong performs free urodynamic examination with all his patients through the foundation. I explain to her about the bowel wash-out method and show the equipment I have brought with me. When Dr. Bolong joins us he demonstrates a lot of interest for cooperation. The more the conversation progresses, the more enthusiastic he becomes. I give him all our material that we gathered both printed and on memory stick. 'The reuse of the catheter will give us lots of chances to motivate parents', he says.

Josua’s mother breastfeeding him.

Doctor Bolong’s Spina Bifida Foundation

De organisation has existed for a long time and seems to have languished. Our suggestions give the doctor new impetus. I suggest to contact the Hydrocephalus Foundation and give him nurse Jem’s references. He also says that children are often brought in too late and that then surgery is the only option. ‘We have to train the maternity departments in the hospitals and start CIC immediately and refer to us. I would need a fulltime nurse for my organisation.’ I talk about intravesical oxybutynin and how also with older patients this can improve the situation. I also talk about IF and the international network PUSH that can be very inspiring. They see the international spina bifida day on October 25th as an opportunity to raise awareness, ‘Maybe we can hire a person with spina bifida to work for the organisation,’ Dr. Bolong says. I tell him about Mario who works for the organisation in Belgium. I promise to also introduce him to Dr. Aldana. Maybe this is the start of a continence management project for the Philippines. As a urologist he has to be able to supervise such a project. I suggest he works out a plan and submits it to us. He wants to hire a full time nurse and suggests paying half of it for his self.

I agree to defend his plan at our board of directors if he opens up his organisation to the poorest people of the country. If he wants to cooperate with the Hydrocephalus Foundation he can maybe start straight away with nurse Jem. In this way, this mission ends with some chance for change.

Dr. Aldana is in contact with a soft drink multinational who wants to invest in awareness raising. Through social media Filipino mothers keep me alert. They cannot wait, the heads of their children increase their hope for change every day. Neither can mother Kristy and Josua.

Newborns with spina bifida in the PGH. We hope they will get opportunities now.

Child-Help stimulates parents to organise themselves and unite. They can effectuate changes.