Breastfeeding the Brave

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 Lyndsey Hookway.

I am happy to deliver training on this topic to any organisation or hospital, as well as breastfeeding groups, either in person or virtually. I currently have 3 training offerings on breastfeeding medically complex children, and one specifically on breastfeeding children with cancer.

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

Eats on feets is an organisation providing resources about informed milk sharing between parents

Human milk 4 human babies is a facebook group and also a wider organisation providing support and linking up individuals who make an informed choice to share milk

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

Condition Resources
Academy of Breastfeeding Medicine protocols Includes protocols for Cleft lip, pre-operative fasting, allergy, analgesia, diabetes and hypotonia https://www.bfmed.org/protocols  
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, birth trauma recovery practitioner and holistic sleep and behaviour coach. She works privately at www.feedsleepbond.com. Lyndsey is a respected International speaker and the Co-founder and Clinical Director of the Holistic Sleep Coaching Program. Her first book – Holistic Sleep Coaching – is out now on Amazon and direct from the publisher. Her second book is due out later this year. Her area of research is supporting breastfeeding in medically complex children. Book Lyndsey to speak at your event by visiting her professional website, where you can also sign up for her free monthly newsletter.

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