Psychosocial Impact On Families Of Children With Femoral-Facial Syndrome

Introduction

Taking care of a child affected by Femoral-Facial Syndrome (FFS) comes with difficulties that, in one way or another, need psychological and social support. This syndrome presents as underdevelopment of the thigh bones and distinguishable facial features in the child.¹ Because of its rarity and how different it presents to every child, only a few people have an awareness of this syndrome.

It is estimated that no less than 1000 people in America are affected by this disease, and the disease lifespan is also unknown.²

This portrays the need for not only physical but also psychosocial research because there are no guidelines for managing this syndrome. Moreover, there is a limited number of people who understand the psychosocial depths of its effects on the family, siblings, and the child with the syndrome.³

This blog will help create a broad understanding of FFS, prompting how we as a community can grasp the psychosocial impact of this syndrome on families. We will dive into what the syndrome is and the psychosocial impacts the syndrome has on families going through this.

The psychosocial impact of FFS on families with children with this syndrome

The families of children diagnosed with FFS need emotional, physical, economic and social support from their peers, family and health organisations to be able to live a fulfilling life so they can happily take care of their loved one. Some FFS symptoms may, in some cases, lead to disability, but this is not guaranteed. Most times, children born with FFS go on to live independent lives. 

When looking at the psychosocial impacts of FFS in families, it is important to note that this syndrome is never a cause for hindering intellectual growth because it only affects the child’s cognitive abilities.⁴ This means that children with FFS have similar intellectual capabilities as their peers and are capable of learning and growing mentally, just like every other child. They can achieve great things in school and all other areas of life, just like everyone else.

Due to the rarity of the disease, there is not enough research and information on the social and psychological ways this syndrome can affect a family. The following is how FFS can impact families psychosocially.

Emotional challenges

There is a lot of stress and anxiety that surrounds a diagnosis like FFS because of the lack of awareness of the syndrome. The stress and anxiety that can accompany hospital visits and surgical procedures that come with an FFS diagnosis can lead to the parents feeling fear of their children getting hurt or procedures going wrong.

This could, in turn, lead to negative emotions such as depression, more specifically post-partum depression. There has not been enough research on this topic, but child disorders like FFS are recorded to cause symptoms of PPD among new mothers. In cases where the mother has more than one child, peer support may be a great source of easing the mother’s concerns and teaching them how to manage their daily life while still taking care of their child with FFS.

This is why it is important to have support systems that can help new mothers with children with FFS. To not only help them manage their mental health but also the adjustments they need to make due to the loss of expected experiences.

Social dynamics and relationships

Social stigma has been noted as a barrier to parents of children with FFS. The lack of awareness is what leads to the misunderstandings about FFS, needing to always answer questions about the syndrome and its symptoms. In some cultures, there could be some misconceptions and superstitions about FFS. This can lead to a lot of exclusion and scrutiny for families with children affected by FFS.

Additionally, as a family, you can experience social isolation and discrimination and later in the future when the child is at school or otherwise. This can lead to a limit in the child’s opportunities, especially if the educational facilities are not inclusive to children with FFS in terms of learning and infrastructure. It can also limit their opportunity to learn and grow through social interactions, especially when surrounded by people who treat them differently.

The demand of caring for a child with FFS can affect the dynamics and relationships within the family because of how invested in the care the parents need to be, from medical appointments to therapies and overall daily care.⁵ It can cause siblings to feel an imbalance in attention, which can sometimes lead to resentment and or jealousy.

Financial and economic burden

The cost of care for children with FFS can become significant. This is due to the multiple doctor visits, therapy needed, medications and other resources that a child with FFS could need, like a wheelchair and many others. All of these can result in a substantial financial burden to some families, affecting their livelihood.

This can also be a contributing cause of family strains and emotional challenges.

Why can FFS prompt such psychosocial effects?

The rarity of FFS, combined with the considerable time and specialised care required to support children with FFS, is what causes such psychosocial effects. It was initially named “femoral hypoplasia unusual-faces syndrome” when it was discovered in the late 1900s by Daentl et al.⁴ This syndrome is acquired from birth and despite it being able to affect various parts of the body. It is commonly characterised by some form of hypoplasia (which is the incomplete development or underdevelopment of an organ in the body) in the bilateral lower extremities or legs and some facial anomalies. These facial anomalies can present and resemble:

• Robin sequence with cleft palate
• Micrognathia
• Retrognathia
• Short nose
• Long philtrum
• Thin upper lip
• Ear malformation

FFS is also characterised by:⁶

• Pelvic anomalies
• Renal and Central Nervous System anomalies
• Defects in the vertebrae
• Extra fingers or toes
• Genitourinary abnormalities
• Underdeveloped lungs
• Abnormal kidney development 
• Patent ductus arteriosus

All these symptoms can cause difficulty in taking care of the child, especially if the primary caretaker has never experienced this before or has more than one child.

Impacts of an FFS diagnosis

Symptoms of FFS can be noted from pregnancy as it can be detected as early as thirteen weeks of gestation, which can be a psychological feat as it is.⁷ Taking the time to get in the right headspace to prepare for a child with FFS can be a great way to reduce psychological stress. Early diagnosis can also help you build resilience and emotional stability through learning about the syndrome. Your health care provider or gynaecologist can be a great source of information and a way to connect you to mothers of children with FFS. This may help you build confidence and resilience when dealing with stigma and when taking care of your child. 

It is important to note that the kind of symptoms experienced by children differ in intensity and can vary when it comes to this syndrome. There are about thirty-five signs and symptoms that can be identified as FFS. This is why it is important if you or your child is affected by FFS to make sure you do not base your methods of care and experiences on other patients, because they may not be similar. Among these symptoms, some are common among FFS patients and others that are not, meaning treatment plans will also not be the same.²

Diagnosing FFS involves several steps to be taken by doctors and healthcare workers to ensure the right diagnosis is made. Children with FFS are mostly born to mothers who have suffered from Diabetes, specifically gestational diabetes.⁸ This kind of diabetes only develops when the mother is pregnant, and her sugar levels rise even if she was never affected by diabetes before.⁹ This rise in blood sugar levels can affect the development of the baby and is associated with one of the biggest risk factors of FFS. The rise in blood sugar levels in the mother’s body, in turn, makes the blood levels in the baby high, causing effects on the development of the child. Affecting how the baby’s organs and bones grow or altering the way they grow due to the high blood sugar in the mother’s body.

It is important to note that as a mother, gestational diabetes is not your fault. It is a medical condition that can affect anyone, despite their lifestyle and habits prior to pregnancy.

Summary

Active communication and support from family and your community is a great place to start when looking for support. Incorporating counselling and psychological therapy for parents and siblings can also be very productive when taking care of a child with FFS. This can aid in reducing feelings of neglect and jealousy among the siblings and help the parents reduce the mental load they may have.

There should also be space for learning within the family unit and extended family members. Learning and building awareness of the disease can significantly add to the support that the primary caretaker needs.

Most importantly, more research needs to be done about this facet of care and how taking care of a child with FFS can have psychosocial impacts on families. This will aid in building support in hospitals.