If your baby has been affected by group B Strep, it is natural to have questions, and to want a better understanding of what has happened.
Looking after your wellbeing
Your baby developing a group B Strep infection can be a scary and traumatic experience. Things may feel out of control, and you may feel isolated and confused, causing distress to you and to those close to you. Your health professionals are the first line for medical help and support. They can direct you to specialised support should you or your family need it.
It’s important to remember that there is no “right” way to cope with your baby’s group B Strep infection. Everyone is different and each of us needs to find a way that works for us and our families. However, there are people that can help. As well as your family and friends, there are health professionals and charities available to support you. Do reach out to them.
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For many parents, understanding what happened is very important. As a first step, your baby’s medical records may help fill the gaps in your knowledge about what happened, and when. You are legally entitled to view or obtain a copy of your own and your baby’s medical records. You may be charged for copies of these notes – up to £50 per set of records when a baby has survived, though there is no upper limit when a baby has died. It may be helpful to ask in advance how much the charge of copies of the medical notes will be. You should not be charged should you just wish to view the records.
You will probably find it helpful to review the records with your healthcare professional so that they can explain what everything means, particularly the medical terminology and abbreviations.
Meetings with your health team
Your hospital may invite you to meet with an obstetrician (pregnancy specialist), midwife and/or paediatrician/neonatologist (specialist in looking after young babies). If no invitation has been offered, you can request a meeting. If you’re not sure of the name of the obstetrician or your baby’s neonatologist/ paediatrician, you can make your request via the PALS (The Patient Advice and Liaison Services). PALS is a service that has been introduced to ensure that the NHS listens to patients, their relatives, carers and friends, and answers their questions and resolves their concerns as quickly as possible. PALS also helps the NHS to improve services by listening to what matters to patients and their loved ones and making changes, when appropriate. You can find officers from PALS from your hospital’s website.
It’s a good idea to plan for the meeting with your health professionals. We recommend you make a list of questions you want answers to. For example:
- What happened to my baby, and should anything have been done differently?
- Is my baby likely to have any long-term issues following their group B Strep infection?
- If I get pregnant again, what can be done to protect a future baby from group B Strep infection?
Take someone you trust to the meetings. They can support you, help you get all the answers you need, and take notes to remind you what was said. You can ask for the hospital to minute the meeting. Don’t be afraid to repeat your questions, or ask for explanations. Medical professionals respect the opinions of parents and will want to answer your questions fully.
NHS staff have a “duty of candour” to their patients. This means doctors, nurses and midwives have a duty to be open and honest with patients when things go wrong and the patient or their child suffers harm or distress as a result. It also means that doctors, nurses and midwives should always report when mistakes are made that have, or could have compromised patient safety.
Continuing care and support for your baby
After you’ve taken your baby home
It is natural for you to be more concerned about your baby’s health than you might otherwise have been had s/he not developed a group B Strep infection.
There is a small chance – estimated to be around 1-3% – that a baby who has had one group B Strep infection may develop another.
If you become concerned about your baby’s health, it’s important that you seek medical advice. You are not wasting anyone’s time or being a nuisance if you raise such concerns with your health professionals – they would much rather see a healthy baby than miss seeing a sick baby and so be unable to diagnose an illness.
The golden rule: “If in doubt, check it out…” and mention group B Strep when you do.
When continuing care is needed for your baby
Most babies will fully recover from their group B Strep infection with no long-term consequences, but approximately one in every 10 babies who survive will have long-term problems. Sometimes it is immediately clear that a baby has sustained long-term health issues as a result of their group B Strep infection. Sometimes, however, the signs may be subtle and only become apparent after a number of years. Problems can be temporary and may disappear completely as the child gets older, or they may be permanent. In all situations, health professionals are there to support your child and you, the parents. An important part of this care is helping you to understand your child’s development.
Your health professionals are the first line of support for you and your baby. They will be able to advise you about your child’s health. If your child has a disability, there are organisations that can offer help and support.
- You can request a social services assessment which will help determine what extra support may be available for you and your child.
- Local Child Development Centres offer a multi-disciplinary assessment for children, from birth until they start school at 4 years of age, who may have a delay in their development or other special needs.
- NHS Choices: ‘Your guide to care and support’, provides advice on caring for a disabled child and signposts a range of additional resources offering practical help and financial support.
- Children and young people (aged under 18) with complex health needs may be eligible for NHS continuing care funding. This is different from NHS continuing healthcare which is for eligible adults. Assessments for children and young people are made according to the Department of Health’s National Framework for Children and Young People’s Continuing Care.
- As a child with a disability grows up, s/he may need an Education, Health and Care Plan (EHCP) to help ensure that their educational needs are met. These are issued following assessment by a local authority.
It can be a tough time for you when your baby is having ongoing investigations and assessments. Do ask for support if you feel you are struggling.
Speaking with other families affected by group B Strep
You might find it helpful to talk with another family who has experienced something similar to you. You might want to talk with another mum or another dad. It can help to know that you are not alone, and they may understand in a way that others simply can’t. You may also want to ask practical questions of others who are, or who have been, in a similar situation. For example, about coping day-to-day with a child with a long-term disability, or about seeking financial support, or what to consider when choosing a nursery or school as the child grows up.
Group B Strep Support can put you in touch with other families willing to share their experiences with you. Please get in touch with us on 0330 120 0795 or info@gbss.org.uk if you would like to reach out to other families in this way.
If you have any questions about Group B Strep, please call our helpline
Mon-Fri 9am-5pm
0330 120 0796
Or email us at info@gbss.org.uk
