Connate Support is a not for profit, Community Interest Company that was created for those families who have a child or children that have been affected by a teratogen: something that the mother had been exposed to whilst pregnant. The challenges faced by these families are unique, and still little understood, by both the layman and many of the professionals whose path they cross. A teratogenic syndrome is something that effects the whole family unit. One of our objectives is to objectives is to support, offer advocacy and share information.
At Connate Community Interest Company, we are willing to share our experience of managing medical, educational, care and support services. We understand that it is not just the child that it is affected; it is, very much, a family experience
Both Karen and Deborah (founders of Connate Support) have children that were born affected by Sodium Valproate, a medicine for epilepsy, which has only recently been proven to be teratogenic. Their children are now in their twenties, and therefore both Deborah and Karen are well versed in the challenges that exist for families affected by a teratogens.
Their experiences led them to campaign along with other patient groups, to raise an awareness of sodium valproate which led to medicine regulators changing their policies and the way they handle teratogenic substances like sodium valproate, and also the development of the Pregnancy Prevention Programme. Sodium valproate is now no longer given to females of child bearing potential unless they are on a strict pregnancy prevention program.
Through their personal experiences, Karen and Deborah have identified a number of unique complex challenges faced by the entire family unit:
· The Affected Child
Many children that have been exposed by a teratogen, will have diverse and complex health problems. Educationally their needs will be complex and not easily managed. Many have difficulty socialising. Accessing appropriate support is also often difficult as their needs are rarely understood or acknowledged. Some of these children are also unacknowledged disabled and yet are young carers for their parents. It is not surprising to know that these children often have mental health problems too.
· The Mother
The mother will often be disabled herself as well as being a carer. It is not uncommon for the mother to also have multiple health problems. She is also likely to have mental health problems.
Many of these are single parent families since frequently families separate as they are unable to cope with the stress that their situation presents. Partners are likely to hold the space for the other family members, whether present father or as a separated or divorced partner. Some fathers are also disabled. The father/partner is sometimes also a carer.
It is not uncommon to have more than one child affected. Not only will they have many of the challenges faced by young carers, it is not uncommon to find they have their own disabilities and are existing as unacknowledged carers within the families.
It is easier to get a diagnosis when the child has been affected by a well-known teratogenic substance such as sodium valproate, alcohol, cocaine, lead, mercury and diabetes. You can find more information on teratogenic substances and health problems on UKTIS: https://www.medicinesinpregnancy.org/Medicine--pregnancy/
A lack of information means that these families will be affected socially. Many will be on benefits experiencing the financially insecure Unfortunately, very few individuals are diagnosed and often remain unaware of their plight.
The lack of awareness of teratogens amongst professionals is poor. It is with these concerns that Deborah and Karen launched Connate Support.