Mother Song Sings a Song of Hope

In response to Elisha's mother's gift to Ben, yesterday, another mother helped by Nursing Matters wants to sing a song of hope... for Ben, Kerry and Mark.

Mother S, or Mother Song, is the mother of Toddler A.

Toddler A was Mother Song's second child. Mother Song was an excellent mother. She was a breastfeeding supporter and attended mothering meetings to support other mothers. She excelled at mothering: so much so, Mother Song was employed by the local Council, to care for disabled children in order for their parents to have a respite break. Such was Mother Song's professional esteem, the council moved her family into a purpose built home - from which she could extend her professional care. It was equipped with all the facilities required, to care for the most severely disabled children. Eight months after moving into this local council approved and supplied home... a home designed for disabled children to be cared for properly... Mother Song went to the toilet. Mothers do.

Whilst she was on the loo, she heard the most piercing, mind shattering scream she could ever imagine to hear, from her precious daughter - Toddler A. Rushing out of the toilet, she found that Toddler A, whom she'd left perfectly happy in the living room, had wandered under the stairs. Toddler A had squirmed behind an ottoman. She'd then appeared to have fallen sideways, down into the gap.

She was screaming in incredible pain.

Mother Song discovered she had a terrible burn across both her chin, and her hand. Mother Song did not hesitate. With Toddler A still screaming, she dialled 999 and called an ambulance. They were taken to hospital, and Toddler A's burns were dressed. They were sent home, and arrangements for the dressings to be changed regularly, were made.

At home, it was discovered that the pipe under the stairs, was both for carrying boiling hot water to the radiator and was unlagged. The council were apologetic, but it was only sealed over after the family subsequently moved house.

Mother Song carried on mothering her little girl, and prayed the healing would be such, that the discussions of plastic surgery for the scars, were premature.

5 days later, when attending at the local hospital to have the dressings changed, the nurse, who has not been involved earlier, changed the dressing. The hand burn was infected, and required anti-biotics. The nurse looked perplexed, and declared she had never seen such a strange injury. The nurse said she wanted the child protection doctor to see the burns. Mother Song made a complaint, there and then.

She was asked to take Toddler A to the hospital, to see a paediatrician. Dr Christopher Hobbs examined the five day old burn, which was infected. He declared it a deliberate injury: NAI, non accidental injury.

Mother Song was told she had branded her own daughter, 15 months old.

Social workers were called, and she was asked to stay at the hospital overnight with her daughter. It would be 'voluntary'. She agreed without hesitation. She trusted the people around her.

Over the next couple of days, the shock of what was happening made it hard for Mother Song. She had two children, a home designed for her to give care to other children, and an impeccable record of caring for others for over a decade.

People believed she had burnt her own child.

She stayed at the hospital whilst it was sorted. She was never to be left alone with the children. Neither child would be allowed home with her. They would go to their grandparents, with Mother Song and her husband, but.... but... Mother Song and the children's father, were to be forbidden from seeing their children overnight. From 8pm, to 8am, they were to go live elsewhere, and not with their children.

Toddler A was breastfed. Toddler A bed shared. Toddler A had responded to the burns, by nursing more and more and more, especially at night. Toddler A used nursing, to soothe her pain and calm her fears. She used her mother' milk to heal her burns. How could it be fair to Toddler A, that her Mum was to be taken from her during the night-time, when she could have her during the day?

Mother Song asked for, and received, a Toddler Advocacy Statement. I phoned Leeds Social Services, and explained we were advocating for Toddler A in the care arrangements. I had, in fact, a free and frank exchange of views with the head of Child Services at Leeds, who uttered the immortal words "If you can't trust Social Services to protect breastfeeding, who can you trust!" I was a little forthright in my views. I my defense, I had Elisha in my mind. We hadn't fought and screamed and protested about Elisha at the beginning... we'd trusted Social Services.

Mother Song gave her social work team the advocacy statement, detailed here below. They debated, and worked through all the issues with Toddler A. They looked at Toddler A as a real child, and made judgements about her, and not a tick box in a form. They made judgments on what they had in front of them, and how Mother Song had acted and cared for her children. They looked, they listened, they heard.

Mother Song was allowed to reside overnight in the grandparents' home. She was never to be left alone with either of her children. She was never allowed to the leave the home with children without escort. Toddler A was to sleep in a separate cot, and not bed share. Mother Song agreed to this readily, she felt it entirely appropriate in the circumstances.

Toddler A would not be deprived of her mother's breast.

Social Services had done the work, and made care arrangements that would protect Toddler A, whilst ensuring she was as safe, and as nurtured and nourished, as possible.

I broke down and cried, when they phoned to let me know. A lot of us cried a lot of tears, for Toddler A and Mother Song.

The chasm opened under the family's feet. The looming threat of the investigation - police came and photographed 'the crime scene' and squeezed under the stairs - and the crushing weight of the power of one person - the Child Protection Paediatrician, threatened to strangle them. Mother Song discovered that the opinion of one man, or woman, can carry the weight of the entire social care system. Dr Hobbs had taken one look at the burns, almost a week after the event, when they were infected, and declared them deliberate. Therefore, they were.

That Dr Hobbs was not an expert in burns, was not the issue. He had spoken: the children were on the pathway to the Family Courts.

There were no opposing voices. The system, which looks as if it has opposing voices on paper, had none. A children's advocate was appointed. Mother Song hoped this would help. The children's advocate read the reports of Dr Hobbs, and agreed. The lead social worker, who had the power to challenge Dr Hobbs, read his reports, and agreed. Everyone read the same bits of paper. Everyone chanted from the same hymn sheet.

The family moved down, inch by inch, to oblivion.

Mother Song was shocked by it all. It took about ten days, for that shock to wear off. She had been waking in a confused and anxious state, and wondering what had happened, how had it come to this, so quickly, so completely? She was grateful for the social work team caring for her family. She knew they had acted well, and she knew they had the interests of the children as their only focus. But she watched as The System took over, and began to crush the hope that this nightmare was going to be over any time soon.

About ten days in, she woke up and found a mother bear in her soul, and she came out fighting. On day 1 she had actively sought a lawyer who would fight for her children: she determined that her this lawyer would not sit back, and comply, comply, comply the children away. With the spectre of Elisha in my eyes and ears, I advised Mother Song to fight fight fight fight. Never let a statement she disagreed with to pass without mention. Never shout, never argue, never be angry. But be adamant for what she believed to be right, and true. She fought. And fought. And fought. We fought with her, on the edges.

The 'usual suspects' on breastfeeding and children involved in the care system, started to emerge.

Dr Hobbs declared that Toddler A was underweight, and cited this in the paperwork as evidence of neglect. He demanded regular weighings, and the threat of removal of Mother Song from her children if weight did not go on, hung in the air. We contacted the World Health Organisation and sent them Toddler A's weight charts. We then took their answers, and prepared an advocacy statement on Toddler A's weight.

The weight 'issue' disappeared from the paperwork.

Mother Song was watched in her interaction with her children. Other socials workers and health professionals watched and noted and made reports. It was noted that when Toddler A was distressed, Mother Song would offer her the breast for comfort.

This was not appropriate. You do not mother a child who can walk, at the breast. This was evidence of bad mothering.

Mother Song took every scrap of evidence presented against her breastfeeding, to her lawyer, and instructed her to fight. The lawyer went into court, and faced out The System, and told them that in the UK, you could not criticise a mother for breastfeeding. The just released NICE guidelines were quoted: it was the duty of all health professionals to support breastfeeding for as long as the mother and child were happy. The System backed off. A court order protecting the breastfeeding was written.

This was a small section of the fight. The main fight was on the burns, and how Toddler A came to fall upon the unlagged pipes. Mother Song contacted burns experts all over the world. She garnered evidence from them, on the nature and type of Toddler's A burns.

All this going on, whilst living in her in-law's home, and then her own mother's home, and never being allowed to be alone with either of her children. Her income gone, their own home abandoned.

Mother Song won. Dr Christopher Hobbs's assertion that the burns were deliberate, were thrown out. The family were cleared.

Toddler A's burns healed, with no scarring. No plastic surgery required. And yes, a lot of breast milk was washed over those terrible burns. Just as a lot of breastmilk was suckled down by an injured child, in need of her mother's breast.

It took months before it was all settled. Even after they were cleared, they had to wait for the police investigation to process through, before they could go on holiday and try and put the nightmares, and fears, behind them. Another little girl joined the family last year. Three daughters, to hold and love and laugh with. Three daughters to learn how to sing their mother's song.

There are a few moments that stick with Mother Song. The moment she had to say in court "I was having a poo, m'lord, and when I heard the scream, I wiped myself and ran." The moment she reheard the 999 phone call in court, with her darling daughter's scream forever frozen in time. The feelings inside, when she googled Dr Christopher Hobbs and the record of his involvement in supporting the Cleveland paediatricians flashed in front of her eyes. The history of miscarriages of child justice, stemming from his unerring ability to see a child once, and know they were being abused. Turning up to the police station to be charged with suspicion of harming her own daughter.

There are other moments, of course, that will never fade. How her friends and community rallied, and believed in her. How the initial social workers at Leeds conducted themselves impeccably, and supported her daughter in her breastfeeding. How many people helped, supported and worked for them.

In that free and frank exchange of views I had with the head of Leeds Child Services, I said that we, Nursing Matters, would praise them to the skies if they did the right thing. She replied they'd do what was right, and that was all that had to be said. I've never been able to praise them, and thank them. Mother Song was still too wounded, too unsure. The scars too deep, as yet unhealed fully.

But when she read of Elisha's story yesterday, in support of Ben, she contacted me and said "Tell them our story, they need to know there is hope."

There is hope Ben. There is hope, Kerry and Mark. Social Workers do act properly and correctly - they do look at the child, and not the paperwork. Mother Song needs you to know that. We all need to believe that. There is right in the world, and sometimes... sometimes... the right decision is made, no matter how bleak it looks.

Here's hoping your own song, will end so well.

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We are advocating on behalf of XXXXX, a breastfeeding infant. We would like to bring to your attention several pertinent points about XX, and her specific needs. These facts need to be taken into consideration when you discuss care arrangements for XXX during this investigation: specifically, the proposal to enforce an abrupt cessation of night feeding upon XXXX, by prohibiting her access to her mother’s breast between 8pm and 8am.

XXX is a bed sharing, night time breastfeeding infant. She feeds anywhere between 5 and 7 times a night. This represents normal parenting practice with a breastfeeding infant. It is both the cultural norm, globally, and medically researched and evidenced as excellent parenting practice.

An abrupt cessation of night time feeding will adversely affect the health and well being of XXXX, and her mother in the following ways.

*XXXX will become distressed and emotionally distraught at the sudden weaning. She will probably lose weight, as she will have lost much of her calorific intake, as night feeding is higher in fats than day time feeding. Her distress may become so great, she might refuse the breast completely. This premature weaning will raise her risks of significant illness later in life, including a higher probability of heart disease and diabetes.

*Her mother will suffer engorgement from the abrupt weaning. If not given appropriate support, this could lead to swelling and infection, and require anti-biotic treatment. Her milk supply will be adversely affected by the lack of night time feeds, and this may result in the loss of the breastfeeding relationship.

Night time breastfeeding supports XXXX’s health and well being by:

giving her excellent nutrition, important when already fighting an infection

supports her immune system, important in helping her heal her burns

comforts and soothes her pain and distress, she is in pain and distress from the burns

protects her mother’s milk supply, particularly when she is distressed herself

We urge you to consider XXXXX’s night time breastfeeding needs as you consider how to support her during this investigation. Her mother has already offered to reside with XXXX in any residential unit you might suggest. Given that enforced and abrupt night time weaning will adversely affect XXXX, and may have life enduring health consequences for her, we advise extreme caution in relation to any proposal to deny her breastfeeding rights.

Evidence and experts

We’ve enclosed full supporting material on all the statements made here, about XXXX’s breastfeeding needs. Many world renowned experts have hurried to XXXX’s defence, and their supporting letters are copied here. Lactation experts such as Dr Jack Newman, Pamela Morrison, and Karleen Gribble, have all written in medical support of XXXX’s needs, with references. Pamela Morrison and Dr Newman are also undertaking an exhaustive study of XXXXX’s weight records from birth, to see if evidence of a clinical problem can be found. This will also allow us to clearly identify any weight loss from enforced weaning, and allow that to be excluded from any investigation of her health since statutory agencies became involved.

All of these experts are happy to be contacted by the statutory agencies, free of charge, in order to give further appropriate medical advice.

If you wish to discuss the risks to XXXX’s health with a breastfeeding expert who is neither part of our organization, nor knows the family, and is local to you, please phone XXXX. She is a breastfeeding counsellor and trainer with the NCT in XXXX.

The European Court of Human Rights’ imperative that breastfeeding infants not be denied the breast is recognized within the English court system:

"Per curiam. If the state, in the guise of a local authority, seeks to remove a baby from his parents at a time when its case against the parents has not yet even been established, then the very least the state can do is to make generous arrangements for contact, those arrangements being driven by the needs of the family and not stunted by lack of resources. Typically, if this is what the parents want, one will be looking to contact most days of the week and for lengthy periods. Local authorities also had to be sensitive to the wishes of a mother who wants to breast-feed, and should make suitable arrangements to enable her to do so, and not merely to bottle-feed expressed breast milk. Nothing less would meet the imperative demands of the European Convention on Human Rights."...
In the matter of unborn baby M; R (on the application of X and another) v Gloucestershire County Council. Citation: BLD 160403280; [2003] EWHC 850 (Admin). Hearing Date: 15 April 2003 Court: Administrative Court. Judge: Munby J. Abstract. Published Date 16/04/2003

If you require any further clarification, or medical evidence from us, please don’t hesitate to contact me.

Addendum

Should you decide to enforce night weaning upon XXXX, we advise you that her mother will immediately require proper lactation support. She will need access to a hospital grade breast pump, at night, to deal with her engorgement and maintain her supply. The expressed milk will need to be stored and transported to XXXX under appropriate storage conditions. We have collected the appropriate information for you, on pump hire suppliers and costs, and couriers capable of cold storage delivery in the XXXXX area.

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We are advocating on behalf of XXXX, a breastfeeding infant. We have been informed that XXXX’s growth has been called into question, specifically her weight gain profile and status. Therefore, we commissioned an independent and well qualified and experienced expert in the field, to conduct as assessment of XXXX’s official NHS weight gain records since birth. Her comprehensive results and analysis are in the next section of this statement.

The expert has stated that there is no indication of any problem in XXXX’s weight chart.

Understanding how to interpret weight gain charts is a complex business. Therefore, for the advantage of the layman, we have also included here a brief summary of how to use weight gain charts. Our expert used the internationally recognized and globally accepted standard of growth, the World Health Organisation’s Child Growth Standards.

The growth standards encompass a weight to height graph, with the normal bell curve of small growth children from smaller than average growth parents, through average growth ranges, to larger growth ranges from larger than average parents. The important factor is not which percentile (where you lie as a reference to rest of the normally growing population) but the individual pattern of growth, the ‘trajectory’:

"The assessment of growth implies looking not at a single measurement point but at the overall trajectory of growth to determine whether a child is tracking along the curve or is crossing centiles towards the lower centiles. Infants born with low birthweight will be expected to track along the lower centiles of the WHO standard since exclusive breastfeeding does not alter the fact that they were small for age in the first place. By looking at a single point, a baby in this category will indeed be considered low weight-for-age; but before deciding that exclusive breastfeeding is inadequate, most health professionals will consider the baby’s birthweight, growth trend, any problems with lactation, and infections that might explain the apparent growth failure." “WHO Child Growth Standards” Dr Mercedes de Onis & Dr Adelheid Onyango, Co-ordinators, WHO Child Growth Standards Project, Geneva, published, The Lancet, January 19^th, 2008

Therefore, there is no causality between being on a low numbered percentile, and this being an indicator of faltering or problematic growth. An infant that tracks through from the 10^th percentile from birth, is as healthy and robust as an infant in the 90^th percentile that is tracking equally smoothly.

In order to make this more clear to the layman, in terms of XXXX’s status as a normally breastfeeding toddler on an appropriate diet of offered complementary solids, we contacted Dr Mercedes de Onis, at the World Health Organization, and explained that a perfectly tracking infant on the 15^th percentile (XXXXX) was being flagged up as having problematic weight growth on the basis of the sort of ‘single point’ assessment the above quote flags up. Her co-worker, Dr Adelheid Onyango, responded on XXXXX’s behalf:

“The internationally accepted cut-off for underweight (by a single-point evaluation) is 

equivalent to the 3rd centile.   Therefore, a child whose growth is tracking on the 15th 

centile cannot be considered to be underweight.”

Dr Adelheid Onyango, Coordinator, Growth Assessment and Surveillance, 
Nutrition for Health and Development (NHD), World Health Organization, 
CH-1211, GENEVA 27, Switzerland, deonism@who.int 
(telephone contact via Family & Community Health, GENEVA, + 041 791 2888)

Therefore, as XXXX’s advocates, we have to inform you that using all current, evidence based medically researched data and theory, no suitably qualified expert can find any indication of a problem with XXXX’s weight gain and pattern of growth, from either a long term trajectory analysis or a single point evaluation.

Please don’t hesitate to contact me if we can help in any other way. Both Pamela Morrison (IBCLC) and Dr Onyango are happy to comment further if required.

Morgan Gallagher

Appended:

** XXX’s Weight Chart Assessment (Pamela Morrison, IBCLC)

** Handy ‘understanding weight and babies’ info sheet (Dianne Weissinger, IBCLC