Resources and FAQs for parents & professionals

If your child or patient/client has just been diagnosed with a medical condition, illness or disability, please start here. This is a collection of resources and guidelines collated over my years of supporting families of medically complex children. Note that research is currently extremely limited in relation to breastfeeding medically complex infants and children at this time. As more information is available, including my recent systematic review, and future research study, it will be added. If you are aware of a useful resource please contact me.

 

Support group

The Breastfeeding the Brave Facebook group is here.

Beads of courage – charity acknowledging the bravery of children in adversity

This website can try to link families facing the same condition up for peer support

Short article I wrote summarising the evidence we have

Short article about breastfeeding babies admitted to hospital

The Breastfeeding the Brave video.

Guidelines and general information

The UNICEF UK Baby Friendly Initiative.

Breastfeeding course for paediatric nurses and e-learning for paediatricians.

World Breastfeeding Trends Initiative. World Breastfeeding Trends Initiative (2020). State of Maternity Protection in 97 Countries: An analysis of WBTi country reports.

The WHO code of marketing of breastmilk substitutes. World Health Organisation (1981).

A Guide to Supporting Breastfeeding for the Medical Professional – book edited by Amy Brown and Wendy Jones

When Your Child is Sick – by Joanna Breyer

Your Child in the Hospital – Nancy Keene

Parental well-being

Being the parent of a sick or medically complex child can be challenging. Please make sure you take care of yourself. Here are some resources to help:

‘For me as a parent’ self-care activities (many of these can take place in hospital) and more here and here. Headspace and Calm are good apps as well. The Mindful breastfeeding book by Anna Le Grange is a good practical resource.

Formula and bottle feeding

First Steps Nutrition Trust – unbiased information about formula, including specialised formula. Responsive bottle feeding from Baby Friendly

Financial and practical support

If you have life insurance with critical illness cover, it is well worth checking to see if you can make a claim on your insurance. This often applies even though your child is not named on your policy, and will have no effect on your own cover.

Please also check with your social worker, or medical team.

Money advice service – providing resources about benefits and how to make a claim

UK based support regarding government aided support

Also check with your hospital – they may have funds and grants to assist with parking, accommodation, and some charities provide a one-off grant.

Accommodation may be provided by your hospital, or there may be a home from home organisation near the hospital, if your child is cared for far from your home. Try Ronald McDonald house

If friends ask what they can do to help, a mealtrain can take the hassle out of coordinating meals. Have a friend set this up and arrange the details for you

Pregnancy and birth

If you are pregnant, and want to find out more about your options in labour and birth, in the first case, ask your midwife or obstetrician. If your child is diagnosed with a condition antenatally, you will probably be offered the opportunity to look around the neonatal unit. If not – please ask.

Here is some information from Bliss about how to prepare before birth

Birthrights website, about human rights in childbirth

WRISK – understanding and communicating risk to parents in pregnancy

Infant Risk website

Antenatal colostrum harvesting / antenatal hand expression information from La Leche League here

Expressing milk, and tube feeding

If your baby is born unwell, or becomes unwell, you will need to protect your milk supply by hand expressing, and using a pump. Here are some resources to help

This is a video from Maya Bolman IBCLC about hand expressing and breast massage

You may be using a breastpump on loan from hospital. If you need to source a breast pump, here are some code-compliant ones:

Ardo Hygeia Limerick Ameda Pumpin Pal

And some general information about pumping, including flange fit here and skin to skin.

This video by Jane Morton MD about how to maximise milk production by using hand expressing as well as pumping, and power pumping information here and here.

Some information and support here about exclusive pumping from Kellymom

Some information here about using a nasogastric (NG) tube

Some information here, here and here about using a gastrostomy (G tube)

Donor milk, milk banking and drugs in breastmilk

If your baby needs to be supplemented, check whether using donor human milk is an option. There are milk sharing organisations as well as national milk banking organisations.

The UK Association of Milk Banking provides resources and information about the national milk banks in the UK

Hearts Milk Bank researches breast milk and provides screened donor milk to babies in need

If you are on medication and need to check breastfeeding compatibility, check out the Breastfeeding Network drugs factsheets, contact Wendy Jones, or see the Lactmed website.

Charities

Several charities will support you: Sick Children’s Trust, Macmillan, CLIC Sargent, Make A Wish, Starlight.

Condition-specific support and information

Arthritis (including JIA and JRA)

https://www.cdc.gov/arthritis/basics/childhood.htm
https://www.arthritis.org/diseases/juvenile-arthritis
https://cks.nice.org.uk/acute-childhood-limp
https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD002824.pub2/full

Asthma

https://www.blf.org.uk/support-for-you/asthma-in-children
https://www.asthma.org.uk/advice/child/diagnosis/
https://cks.nice.org.uk/asthma#!scenario

Autism Spectrum Disorder

https://www.autism.org.uk/about/diagnosis/children.aspx
https://www.childautism.org.uk/
https://cks.nice.org.uk/autism-in-children

Brain Injury

https://childbraininjurytrust.org.uk/
https://www.braininjurygroup.co.uk/living-with-brain-injury/children-brain-injury/
https://www.headway.org.uk/about-brain-injury/further-information/useful-organisations/children-and-young-people/
https://www.braininjuryhub.co.uk/

Cancer

https://www.cclg.org.uk/childhood-cancer
https://www.cancer.org/cancer/cancer-in-children/types-of-childhood-cancers.html
https://www.cancer.gov/types/childhood-cancers

Cerebral Palsy

https://www.cerebralpalsy.org.uk/
https://raisingchildren.net.au/disability/guide-to-disabilities/assessment-diagnosis/cerebral-palsy
https://www.nice.org.uk/guidance/ng62

Cleft lip/palate

https://www.clapa.com/what-is-cleft-lip-palate/
https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/cleft-lip-and-palate
https://www.clapa.com/treatment/feeding/breastfeeding/
https://www.laleche.org.uk/breastfeeding-a-baby-with-cleft-lip-and-palate/

Congenital diaphragmatic hernia

https://www.gov.uk/government/publications/cdh-description-in-brief/congenital-diaphragmatic-hernia-cdh-information-for-parents
https://patient.info/doctor/congenital-diaphragmatic-hernia
https://rarediseases.info.nih.gov/diseases/1481/congenital-diaphragmatic-hernia

Congenital Heart Defect

https://www.bhf.org.uk/informationsupport/conditions/congenital-heart-disease
https://www.mayoclinic.org/diseases-conditions/congenital-heart-defects-children/symptoms-causes/syc-20350074
https://www.heart.org/en/health-topics/congenital-heart-defects/care-and-treatment-for-congenital-heart-defects/feeding-tips-for-your-baby-with-chd

Cystic Fibrosis

https://www.cysticfibrosis.org.uk/what-is-cystic-fibrosis
https://www.blf.org.uk/support-for-you/cystic-fibrosis/what-is-it
https://patient.info/chest-lungs/cystic-fibrosis-leaflet
https://www.marchofdimes.org/complications/cystic-fibrosis-and-your-baby.aspx
https://jamanetwork.com/journals/jamapediatrics/article-abstract/515379

Diabetes

https://www.diabetes.org.uk/Guide-to-diabetes/Your-child-and-diabetes
https://www.nice.org.uk/guidance/ng18
https://kellymom.com/health/baby-health/breastfeeding-type-1-diabetes-child/

Down Syndrome

https://www.ndss.org/about-down-syndrome/down-syndrome/
https://www.downs-syndrome.org.uk/
https://www.nhs.uk/conditions/downs-syndrome/how-to-help-children-and-young-people/
https://www.breastfeedingnetwork.org.uk/downs-syndrome-and-breastfeeding/
https://www.ndsccenter.org/wp-content/uploads/CDSS_breastfeeding_brochure.pdf

Epilepsy

https://www.epilepsysociety.org.uk/epilepsy-childhood
https://www.epilepsy.org.uk/info/children
https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/epilepsy
https://www.nice.org.uk/Guidance/QS27

FPIES

https://www.fpiesuk.org/
https://www.kidswithfoodallergies.org/food-protein-induced-enterocolitis-syndrome-fpies.aspx
https://fpiesfoundation.org/about-fpies-3/

Gastroschisis, short gut syndrome and Exomphalos

https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/gastroschisis
https://www.cdc.gov/ncbddd/birthdefects/gastroschisis.html
https://rarediseases.info.nih.gov/diseases/8661/gastroschisis
https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/exomphalos
https://www.gov.uk/government/publications/exomphalos-description-in-brief
https://www.niddk.nih.gov/health-information/digestive-diseases/short-bowel-syndrome

GORD

https://cks.nice.org.uk/gord-in-children#!scenario
https://www.guidelines.co.uk/gastrointestinal/nice-gord-in-children-guideline/252583.article
http://lifib.org.uk/reflux-in-infants-for-parents-and-carers/
https://www.breastfeedingnetwork.org.uk/reflux/
https://gpifn.org.uk/reflux-and-gord/

Hirschsprung’s Disease

https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/hirschsprungs-disease
https://patient.info/digestive-health/constipation/hirschsprungs-disease
https://www.niddk.nih.gov/health-information/digestive-diseases/hirschsprung-disease

Laryngomalacia

https://rarediseases.info.nih.gov/diseases/6865/laryngomalacia
https://bestpractice.bmj.com/topics/en-gb/754
https://www.thoracic.org/patients/patient-resources/resources/laryngomalacia.pdf

Liver Disease

https://childliverdisease.org/
https://childliverdisease.org/yellow-alert/
https://www.niddk.nih.gov/health-information/liver-disease/biliary-atresia
https://kidshealth.org/en/parents/liver-transplant.html

Phenylketonuria and metabolic diseases

https://ghr.nlm.nih.gov/condition/phenylketonuria
https://www.rch.org.au/clinicalguide/guideline_index/Metabolic_disorders/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3383634/
https://www.jognn.org/article/S0884-2175(15)35340-5/pdf

Prader Willi Syndrome

https://ghr.nlm.nih.gov/condition/prader-willi-syndrome
https://rarediseases.info.nih.gov/diseases/5575/prader-willi-syndrome
https://www.pwsavic.org.au/get-support/early-years/diet-and-nutrition/
https://www.thealphaparent.com/triumphant-tuesday-breastfeeding-baby-6/

Sickle Cell Anaemia and Thalassaemia

https://www.sicklecellsociety.org/resource/sickle-cell-anaemia/
https://cks.nice.org.uk/sickle-cell-disease
https://www.chp.edu/our-services/cancer/conditions/sickle-cell/resources/infants-and-toddlers

Skin conditions

https://www.dermnetnz.org/topics/skin-conditions-in-children/
http://www.dermatologist.org.uk/skin-conditions.html
https://nationaleczema.org/eczema/children/
https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/eczema

Spina Bifida

https://www.shinecharity.org.uk/spina-bifida/spina-bifida
https://www.cdc.gov/ncbddd/spinabifida/facts.html
https://www.nrshealthcare.co.uk/articles/condition/spina-bifida

Taste and smell disorders (can occur in isolation or with chemotherapy)

https://ueaeprints.uea.ac.uk/id/eprint/50291/1/Chem_Senses_2014_Philpott_chemse_bju043.pdf https://www.hopkinsmedicine.org/health/conditions-and-diseases/smell-and-taste-disorders
http://www.anosmiafoundation.com/disability.shtml
https://www.nidcd.nih.gov/health/taste-disorders

Tracheoesophageal fistula and oesophageal atresia

https://rarediseases.info.nih.gov/diseases/7792/tracheoesophageal-fistula
https://bestpractice.bmj.com/topics/en-gb/760
https://www.clinicalguidelines.scot.nhs.uk/ggc-paediatric-guidelines/ggc-guidelines/neonatology/oesophageal-atresia-and-tracheo-oesophageal-fistula/

 

 

Lyndsey Hookway is a paediatric nurse, health visitor, IBCLC, holistic sleep coach, PhD researcher, international speaker and author of 3 books. Lyndsey is also the Co-founder and Clinical Director of the Holistic Sleep Coaching Program, co-founder of the Thought Rebellion, and founder of the Breastfeeding the Brave project. Check Lyndsey’s speaker bio and talk brochure, as well as book her to speak at your event by visiting this page. All Lyndsey’s books, digital guides, courses and webinars can be purchased here, and you can also sign up for her free monthly newsletter here.