Most children develop more abilities during the first five years of their lives than at any other time. Children are of course individual and so all grow and develop at different rates but there are some standard developmental milestones that give an indication of how a child is progressing.

The role of checking the milestones in a baby or young child’s life falls to their health visitor or the GP.

They will measure growth and feeding, the way the body is developing, hearing and simple eyesight. As the child grows they will be checking their language, dexterity, walking and concentration development.

Most babies have the milestone tests done shortly after birth, at one or two weeks, again at six to eight weeks, at nine to twelve months and then finally at aged two to two and a half years. Visit www.nhs.uk/conditions/pregnancy-and-baby/pages/baby-reviews.aspx to find out more.

Once the children move into nursery or early years schooling the assessments will be done by teachers, nursery nurses or classroom assistants.

At every stage of a child’s early development parents will be involved in the assessment process and encouraged to help a child to meet their milestones but also to highlight where they think there may be a delay.

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Childhood development for a child with a complex heart condition

A baby who has been born with a complex heart condition, low oxygen saturation levels, who may have needed early surgery or a prolonged stay in hospital would be expected to show some delay in their early development.

  • Their weight gain may be slow because feeding is a tough job for babies with half a heart, they need lots of calories to run an inefficient heart but they don’t have the energy to feed. There is little energy left for growth. They are often at the bottom of the growth centile chart used to measure weight gain. This is normal but of course support is needed to maximise the growth possible for each child.
  • After their first operation they may be tired. It takes energy to recover from surgery. Their hearts are only in the beginning stages of reconstruction so energy levels are low.
  • Low oxygen saturations mean there is less energy for growth and development.
  • Anyone measuring their development at this time will need to take into account their medical history when assessing them.

Normal childhood development

The main areas of learning and development in the first few years of life are:

  • Personal, social and emotional – such as copying facial expressions, responding to what parents say and becoming a conversational partner, forming close attachments, playing with other people, showing affection and concern for others, learning to wait or take turns, feeling confident in themselves.
  • Communication – such as smiling, listening, responding to words, pointing to objects, talking, reading and writing, and expressing needs, thoughts and feelings.
  • Physical – such as holding and handling objects, sitting up, crawling, walking, using the toilet, dressing themselves and becoming agile and exploratory.
  • Thinking – learning about the world, developing understanding, solving problems and being creative.

Once a child has had the the Glenn procedure (Cavopulmonary connection or the Hemi-Fontan), they have better oxygen saturations leading to better energy levels. Although not the same as their peers, they start to grow a little faster and many of the children will begin to catch up on any developmental delay.

In a majority of cases the children will meet their milestones within normal developmental spans, for example, children usually learn to walk just after they are 12 months old. The accepted range of ages to learn to walk is from nine to eighteen months old and children with a single ventricle heart condition are more likely to walk at the end of this developmental span.

It is common for cardiac children to be slow to develop their balance, so riding a bicycle may take longer. Fine motor control is a challenge so holding a pencil, doing up buttons or tying up laces can be difficult.

Reduced energy can lead to a lack of concentration and easy distractibility.

Most of these challenges can be overcome with positive support and reinforcement and awareness that children’s energy levels, even after all of their operations, will never be the same as their peers.


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Developmental delay

Some children with a complex heart condition may struggle to meet all of their milestones.

If concerns about a child’s development are raised at any stage of assessment by the health or educational professionals, or by parents or carers, a child will be referred to a paediatrician who specialises in health and wellbeing. They will conduct an assessment in partnership with other professionals such as clinical psychologists, educational psychologists, speech and language therapists or physiotherapists depending on the child’s age, strengths and weaknesses.

It is extremely important that any developmental delays are picked up early and monitored for signs of deterioration or improvement. This opens up the opportunity for support and advice to help with weaknesses and make the most of strengths. In the early years this help is going to come from physiotherapists and speech and language therapists, while in school, classroom and support teachers will be applying the advice of special educational needs co-ordinators and educational psychologists.

If a long-term problem is diagnosed support for each child will be needed in school to ensure that they are able to reach their full potential. Some delays do not have a name but common problems are:

Dyspraxia

Delays the development of fine motor control, such as holding a pencil and learning to write, doing up buttons or tying laces.

Dyslexia

Delay with reading and spelling despite having the ability to learn.

Attention Deficit Hyperactivity Disorder (ADHD)

When a child has difficulty in concentrating, hyperactivity and impulsivity.

Autistic Spectrum

Also known as Autistic Spectrum Disorder (ASD). Autism is a lifelong developmental disorder that affects how a person communicates with, and relates to other people. Having autism also affects how someone makes sense of the world around them. Autism is a spectrum condition, which means that while all people with autism share certain difficulties, the condition affects them in different ways. Some people with autism are able to live relatively independent lives but others may have accompanying learning disabilities and need a lifetime of specialist support.

Asperger Syndrome

Asperger Syndrome is a form of autism. People with Asperger Syndrome are often of average, or above average intelligence. They have fewer problems with speech but may still have difficulties with understanding and processing language and social skills.

Education, Health and Care Plans (EHCPs) to support each child who has an added education need is essential. For more information on EHCPs click here.


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Why are children with a heart condition more likely to have a long-term developmental problem?

There are a number of reasons why a child with a complex heart condition may have a problem with their development.

  • Low levels of oxygen. The brain requires oxygen to create energy, grow and develop. If a child has long periods of time with low oxygen saturation levels it may affect how the brain works.
  • Repeated complex heart operations created a greater risk of low oxygen levels.
  • Many genetic disorders have both a heart abnormality and a developmental delay component.
  • Failure to thrive. A child who is always underweight and unable to take in enough food or absorb the right nutrients may lack the energy needed to allow for development.

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Top tips from parents seeking information and support with a developmental concern

Parents are often the first to notice their child has a problem. If you are concerned about your child’s development, discuss it with your GP or health visitor.

  • Use your personal child health record to record your child’s achievements and at what age they occurred. This can be a useful aid when discussing your concerns with health professionals.
  • Before going to appointments to school meetings, think about what you want to say and any questions you want to ask. It can help to write these down and take along with you.
  • If you don’t understand what you are being told, say so and ask them to explain it again. Don’t be afraid to ask questions, however silly or insignificant you think they may seem.
  • Take someone with you who can take notes while you talk.
  • Listen to the advice offered and ask to have another appointment if you feel you need time to think about what has been said.
  • If you feel that your child needs an assessment or to be seen by a specialist, don’t be afraid to ask.
  • You should not have to wait for a diagnosis before getting support for your child’s development. Talk to your GP, health visitor, children’s centre and if your child is in nursery or school, talk to the special education needs co-ordinator about what help can be provided.
  • Concentrate on what you can do to help and support your child now – rather than totally worrying about difficulties they might or might not face in the future.
  • Don’t forget your friends and your family too! Include them in discussions right from the start so they can learn and understand with you.
  • Spend time having fun with your child and enjoy what they CAN do.
  • You might finding sharing your thoughts and ideas, hopes and fears with other parents helpful. The LHM parents Facebook site can be a great place to share concerns.
  • If you are told that your child is having problems in school make sure that you ask the teachers what they are going to do about it rather than taking on the burden yourself.

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Further support

The Council for Disabled Children

https://councilfordisabledchildren.org.uk/

Contact A Family

Freephone: 0808 808 3555

www.cafamily.org.uk

IPSEA

Tel: 01799 582030

www.ipsea.org.uk

Updated: July 2017

Review due: July 2019

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