Petition to Conduct CBI Enquiry into Murder of Dr J A Mathan

Monday, 9 March 2009

Child Abuse involving Medical Negligence in Child with Serious Congenital Abnormalities: VACTER-L Association

Child Abuse involving Medical Negligence in Child with Serious Congenital Abnormalities: VACTER-L Association 
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by Dr Savio Pereira & Roshni Pereira (in association with CRISP-India)
VACTER-L (VATER) association is a nonrandom association of congenital birth defects. At least THREE of the birth defects have to be present to be labelled as VACTER-L Syndrome.
1-------ABOUT CRISP----------
CRISP is a Non Governmental Organization (NGO) founded recently by a group of citizens, who recognize the serious effects of "parental alienation" on children due to single parent families on account of divorce or separation. CRISP also focuses on furthering the rights of a child to remain connected with both parents. While most NGOs pertaining to children deal with issues related to child labor, education etc we deal with issues related to unquestionable right of children to be cared for by both biological parents.

CRISP's aims and objectives are based on research findings worldwide which indicate that children do best when both parents are actively involved in their lives, even after separation or divorce. We believe that conflict between parents will get reduced and the mental and emotional health of children will improve, when divorcing parents can be assured of equal and meaningful contact with their children with mutual cooperation.

According to CRISP, Parents contemplating divorce should be given mandatory counseling on "shared parenting" and the benefits there of by a panel of experts supervised by the family court. This will eliminate unnecessary child custody battles and stress to the parents and the child and also wasting of precious time of the courts.

Parental alienation occurs, when one parent disallows the other parent from communicating with their children for personal vendetta. The dominant parent then brainwashes the child against the other parent, assuring the child that it is all right to ignore the other parent." This brings a lot mental distress and trauma to the child and the alienated parent.

Indian legal system is still based on patriarchal mindset, which considers fathers as not capable of nurturing the children. However, today many fathers are competent of taking care of the needs of the children for normal upbringing. When women can multitask by going to work after domestic chores and also take care of children, it is baseless to say that men/fathers are not capable of taking care of children. With rise in number of working parents in nuclear family setup, father's involvement in raising the children is a must. Otherwise, the child is simply left at the mercy of servants and strangers in day care centers and exposed to all sorts of child abuse.

The mindsets in Indian legal system have to change by taking account of the current social situation. Shared parenting is recognized in many western countries.
CRISP demands an Early Intervention Project where divorcing parents would have to meet with a panel of experts to clarify issues such as custody, finance, education and children's upbringing before proceeding with the divorce decree.

"Studies have shown that children who go through their parents' divorce have more conduct problems,symptoms of psychological maladjustment,
lower academic achievement,Social difficulties and problematic relationships with both parents.
To make matters worse, many parents often influence their children to choose one parent over the other and this is often traumatic for the child and this cruelty on the children has to be stopped immediately.
2-----------CASE STUDY: VACTER-L ASSOCIATION----
As Medical Counsellor for CRISP-India (Children's Rights Initiative for Shared Parenting), I diagnosed this serious association in a 8 year Child who is at the heart of a disturbing Custody battle between parents in Bangalore.

Mr Ramesh (not his real name)  aged 35 years visited CRISP with his predicament. His son Sandesh (not his real name) is under the custody of his mother and has congenital anomalies. Ramesh married Shakuntala (not her real name) in 2001. Immediately after marriage, Shakuntala moved to her parents' home in the eight month of her pregnancy. She conceived and thereafter stayed in her parental home (except for a brief period of 6 months in 2003). The child was in the custody of the mother, and the father was left out of the decision-making and information process of the Child's medical treatments.

There has been serious Child abuse with additional Medical Negligence in this particular study.
Prior to the Medical consultation, the Child has so far been diagnosed with 1. Congenital Spondylosis (L2 Hemi-vertebra = VERTEBRAL ANOMALY) 2. Anal Stenosis 3. Limb abnormality (Congenital Talipes Equinovarus) 4. Ruptured Meckel's diverticulum with peritonitis.
The Child needs a Complete evaluation of Cardiac Status (Rule out Ventricular Septal Defects) and other features of VACTER-L association.

More details will be posted in detail in various associated blogs/websites of Human Rights Organizations.

(Confidentiality will be maintained to protect the identity of the parents and Child involved in all postings related to this Case Study. Names of the individuals have been changed to protect their identity).
3-----------VACTER-L Knowledge Base-------
VACTER-L association
Classification and external resources
ICD-10 Q87.2
OMIM 192350
DiseasesDB 13779

VATER syndrome or VACTERL association is a nonrandom association of birth defects

The reason it is called an association, rather than a syndrome is that while all of the birth defects are linked, it is still unknown which genes or sets of genes cause these birth defects to occur.
Each child with this condition can be truly unique, with defects being different from any other child. At present this condition is treated after birth with issues being approached one at a time.
VACTERL association can be linked to other similar conditions such as, Klippel Feil and Goldenhar Syndrome including crossovers of conditions.

No specific genetic or chromosome problem has been identified with VACTERL association. 

VACTERL can be seen with some chromosomal defects such as Trisomy 18 and is more frequently seen in babies of diabetic mothers. VACTERL association, however, is most likely caused by multiple factors.
VACTERL association specifically refers to the abnormalities in structures derived from the embryonic mesoderm.

Features

V - Vertebral anomalies
A - Anal atresia
C - Cardiovascular anomalies
T - Tracheoesophageal fistula
E - Esophageal atresia
R - Renal (Kidney) and/or radial anomalies
L - Limb anomalies (in front of or above the central axis of the limb).

Vertebral defects
Vertebral anomalies, or defects of the spinal column, usually consist of small (hypoplastic) vertebrae or hemivertebra where only one half of the bone is formed. About 70 percent of patients with VACTERL association will have vertebral anomalies. In early life these rarely cause any difficulties, although the presence of these defects on a chest x-ray may alert the physician to other defects associated with VACTERL. Later in life these spinal column abnormalities may put the child at risk for developing scoliosis, or curvature of the spine.

Picture: Scoliosis due to Hemivertebra

Anal defects
Anal atresia or imperforate anus is seen in about 55 percent of patients with VACTERL association. These anomalies are usually noted at birth and often require surgery in the first days of life. Sometimes babies will require several surgeries to fully reconstruct the intestine and anal canal.


Esophageal defects
Esophageal atresia with tracheo-esophageal fistula (TE fistula) is seen in about 70 percent of patients with VACTERL association, although it can frequently occur as an isolated defect.


Fifteen percent to 33 percent of patients with TE fistulas will also have congenital heart disease. However these babies usually have uncomplicated heart defects, like a ventricular septal defect, which may not require any surgery.

Renal / Kidney defects
Renal or kidney defects are seen in approximately 50 percent of patients with VACTERL association. In addition, up to 35 percent of patients with VACTERL association have a single umbilical artery (there are usually two) which can often be associated with kidney or urologic problems. These defects can be severe with incomplete formation of one or both kidneys or urologic abnormalities such as obstruction of outflow of urine from the kidneys or severe reflux (backflow) of urine into the kidneys from the bladder. These problems can cause kidney failure early in life and may require kidney transplant. Many of these problems can be corrected surgically before any damage can occur.

Limb defects
Limb defects occur in up to 70 percent of babies with VACTERL association and include absent or displaced thumbs, extra digits (polydactyly), fusion of digits (syndactyly) and forearm defects. Babies with limb defects on both sides tend to have kidney or urologic defects on both sides, while babies with limb defects on only one side of the body tend to have kidney problems on that same side. 
Picture: Congenital Talipes EquinoVarus (CTEV) or Club foot

Growth
Many babies with VACTERL are born small and have difficulty with gaining weight. Babies with VACTERL association, however, do tend to have normal development and normal intelligence.
The diagnosis is made if at least three of the seven defects are present in an infant.

Epidemiology
The VATER association has an estimated incidence of 16 cases per 100,000 live births. It is seen more frequently in infants born to diabetic mothers. It is rarely seen more than once in one family.

Pathology
Patients with abnormal cardiac and kidney function may be more at risk for hemolytic uremic syndrome.

Summary:
The 8-year old Child with Scoliosis and other related anomalies, is being Medically neglected in the bitter custody battle between the parents. The utmost need of the day is to protect the interests of the Child and give him the medical attention needed urgently. CRISP will help in guiding the Medical Management of this particular Case Study. More details will be posted by CRISP and friends of CRISP.

About the Author:
Dr Savio Pereira is a qualified Surgeon with additional qualifications in Management, Healthcare Informatics and Health Systems from presitigious institutions. He is an active Netizen with serious blog postings on Social issues and political activism.

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