Little Heart Warriors Michelle Butler

Today I spoke with Rosy and Warren about their son Beni's prenatal diagnosis of:

- Transposition of the Great Arteries;

- VSD;

- Bicuspid Neoaortic Valve.

Beni is now 19 years old and recently transferred to the adult cardiac unit and is off to university.  Such an interesting conversation with Rosy and Warren as the world looked very different 19 years ago and access to information and networks weren't widely available.

I hope you enjoy the episode.

Today I spoke with Louise about her son Lucas' story.

Lucas is a twin with brother Logan, and was diagnosed postnatally at 9 weeks old with:

- Coarctation of the Aorta

- VSD (which closed on its own eventually)

Lucas is now 8 years old and doing amazing after suffered 4 cardiac arrests within his first few weeks of life and undiagnosed after 3 hospital admissions.

I talk to Louise about Lucas 'cool' scar, celebrating heart days and life since surgery.

Louise mentioned the breathing mats that detected when Lucas went into cardiac arrest when they were all sleeping so wanted to place a link here as this seems like the best piece of baby equipment you could buy, when your baby has a heart condition and if not:

https://www.amazon.co.uk/Angelcare-Ac027-Sensasure-Movement-Monitor/dp/B07RG5VV2Q/ref=asc_df_B07RG5VV2Q/?tag=googshopuk-21&linkCode=df0&hvadid=255468571917&hvpos=&hvnetw=g&hvrand=4469946355205776871&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=1007024&hvtargid=pla-782966069423&psc=1&th=1&psc=1

This episode I spoke with Caroline about her 5 year old son, William and their journey from a post natal diagnosis of:
- Double Outlet Right Ventricle
- VSD
- Failing Aortic Valve
I spoke with Caroline about how she speaks with William about upcoming surgery, her coping strategy of sitting in the darkness and some of the feeding challenges she experienced.
I hope you enjoy the episode and please remember to rate and review, you can now also follow us on Facebook @littleheartwarriorspodcast.

TRIGGER WARNING

I spoke with Lauren, who has our youngest baby so far at just 5 months old, Ellie.  Ellie was diagnosed during Lauren's 20 week scan with:

- Transposition of the Great Arteries (TGA)

During Ellie's 12 weeks in hospital she suffered some significant set backs and this is a warning that this episode could be triggering for some listeners.

I talk with Lauren about Ellie having an open chest after surgery, being told there was a 50/50 chance of one of the procedures working after Ellie went into a critical condition and the 'miracle baby' that she became.

We talk about a range of medical conditions and treatments in this episode, and have provided explanations (from Dr Google) for each below:

Necrotizing Enterocolitis - a serious gastrointestinal problem that mostly affects premature babies.  The condition inflames intestinal tissue, causing it to die. 

Chylothorax - a rare condition in which lymphatic fluid leaks into the space between the lung and chest wall.  When this fluid builds up in the lungs, it can cause a severe cough, chest pain and difficulty breathing.  Chylothorax is a lymphatic flow disorder.

ECMO - In Extracorporeal Membrane Oxygenation (ECMO), blood is pumped outside of the body to a heart-lung machine that removes carbon dioxide and sends oxygen filled blood back to tissues in the body.

Stoma - a round or oval opening made during surgery through the tummy wall.  It lets the bowel connect onto the surface of the tummy.  Poo will no longer pass out of the rectum and anus in the usual way.  Instead it will pass out of the stoma, into a disposable bag that is worn over the stoma.

Links to charities discussed in the podcast:

Tiny Tickers: https://www.tinytickers.org/

British Heart Foundation: www.bhf.org.uk 

Roles were swapped in this episode where previous guest Corey took the reigns and we chatted about Maisy's story.

Maisy, born in September 2020, was a Covid Baby and was diagnosed with:

- Coarctation of the Aorta

- VSD (hole in the heart)

We chat about juggling a baby in hospital with a toddler at home, speedy recoveries and a general consensus that these heart babies are very special.

Links discussed in this episode:

H&M - side button vests:

https://www2.hm.com/en_gb/productpage.0814306002.html?utm_id=go_cmp-12828082241_adg-121943360096_ad-517954073900_pla-323567503382_dev-c_ext-_prd-en-0814306002005_sig-CjwKCAjw9uKIBhA8EiwAYPUS3ETf2mNo6r5nuGeJA-XLef2w7Pw47OdKZqvn65Zz_myxqY1I959liBoCgc0QAvD_BwE&utm_source=Google&gclid=CjwKCAjw9uKIBhA8EiwAYPUS3ETf2mNo6r5nuGeJA-XLef2w7Pw47OdKZqvn65Zz_myxqY1I959liBoCgc0QAvD_BwE

H&M - footless babygros:

https://www2.hm.com/en_gb/productpage.0769102088.html?utm_id=go_cmp-12796663563_adg-126516120652_ad-516052907653_pla-323810612138_dev-c_ext-_prd-en-0769102088007_sig-CjwKCAjw9uKIBhA8EiwAYPUS3Bt7KqCm1M_rrMYiQCNnmGs7jGxKZvdFsd-apsqzzrPPljdFjS-h0xoCijgQAvD_BwE&utm_source=Google&gclid=CjwKCAjw9uKIBhA8EiwAYPUS3Bt7KqCm1M_rrMYiQCNnmGs7jGxKZvdFsd-apsqzzrPPljdFjS-h0xoCijgQAvD_BwE

Headspace - fear of the future meditation programme:

https://www.headspace.com/articles/how-to-stop-worrying

We speak to Georgia from the Isle of Wight about her little boy, Teddy now 2.5 years old, who was diagnosed at her 20 week scan with:

- Double Right Outlet

- Left isomerism

- AVSD

- Situs inversus

We talk about how Georgia was airlifted to Princess Anne Hospital, Southampton after her waters broke at 37 weeks, Teddy's unexpected surgery at 5 months old and her thoughts about his upcoming surgery when's he reaches 4.  Also, exciting new baby news!

Please find links below of some of the mentioned support websites:


Little Heart Matters: https://www.lhm.org.uk/
Tiny Tickers: https://www.tinytickers.org/
Families of Ocean Ward: https://oceanward.co.uk/