• Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar
  • Skip to footer
Donate now
  • About Tiny Tickers
  • Media Centre
  • Contact Us
Tiny Tickers

Tiny Tickers

Donate now
  • Support & Info
        • Support & Info

          Wherever you are on your journey, we’re here to offer the support and information you need.

          Find out more
        • What is Congenital Heart Disease?
        • Family Support
        • Are you pregnant?
        • Are you pregnant?
        • Just had a baby?
        • Has your baby got a heart defect?
        • Think HEART
        • Bereavement
        • Useful Resources
  • Professionals
        • Professionals

          We are here to help healthcare professionals improve the detection and treatment of congenital heart defects.

          Find out more
        • Sonographer Cardiac Training
          Our trainer, Niki, with sonographers from Russell Hall Hospital
        • Training services
        • Tiny Tickers' Yorkshire Sonographer Training Project to detect heart conditions
        • Training Resources
        • Cardiac Resources
        • The first Tiny Tickers funded pulse oximetry machine, at Good Hope Hospital
        • Pulse Oximetry Resources
        • Think HEART & Think 20
        • Resources Order Form
  • Get Involved
        • Get Involved

          Whatever your skills and interests, there is a way for you to make a difference to babies with heart problems.

          Find out more
        • Donate
        • Donate
        • Give a gift in your will
        • Our Appeals
        • Challenge events
        • Corporate Support
        • Fundraise
        • Share Your story
        • Play our lottery
  • Blogs and News
  • Your Stories
  • About Tiny Tickers
        • Our Work
        • Our Plans & Ambitions
        • How We Are Funded
        • Meet Team Tiny Tickers
        • Join Our Team
        • Our Values
        • Tiny Tickers’ Annual Reports
  • Media Centre
        • Brand Guidelines
        • CHD Statistics and Research
        • Family Stories
  • Contact Us
You are here: Home / Your Stories / My daughter Tia and her heart battle

My daughter Tia and her heart battle

3rd February 2016 in Your StoriesTetralogy of Fallot

My daughter Tia was born in 2005, weighing 7lb6. I was 17 at the time, and had a very normal, healthy pregnancy. My scans had not given any cause for concern, and everything appeared to be normal.

But as soon as my little girl was born, at 12.27pm, we knew there was a problem.

Tia was blue and lifeless. She was immediately taken to the special care unit at our local hospital in Cheshire, but, without specialized equipment, it was impossible to diagnose exactly what was wrong. Her chance of survival depended on the allocation of a bed at a specialist hospital.

Every hospital in the UK was called but nobody could take us. We were just considering sending her to France when a bed became available at Leeds General Infirmary.

image1By this stage, Tia was very weak, and we were told to say our goodbyes.

Six hours after birth, we were on our way to Leeds and by 3am, we finally had our diagnosis. Tia had Tetralogy of Fallot with Absent Pulmonary Valve Syndrome – a rare congenital heart defect. I was utterly exhausted from the birth, the travelling and the stress, but I remember every word.

Again, we were told to prepare for the worst.

Tia grew stronger every day. By Day 4, I could finally hold my baby; soon after that, she was transferred to Alder Hey Hospital, a little closer to home; and then, two weeks later, we took her back to our local hospital. Slowly but surely she started to take feeds which was amazing – I could feed my baby! And at long last, with mixed emotions (very daunting to be on our own with no professional advice or monitors!) we were able to take her home.image3

Tia did struggle with weight gain and so needed NG tube feeds until she was 3 years old. Then, in 2009, Tia had her first open heart surgery at the Evalina Unit in London. The surgery lasted six hours and then it was done, and Tia was asking to watch Peppa Pig! She was out of hospital within two weeks.

That was seven years ago. Tia will require more heart surgery soon but she is a very strong little girl. As she got older, it became clear that she had other medical problems and she was eventually diagnosed with a rare chromosome duplication disorder on chromosome 1. The only case worldwide.

Every day she faces a new challenge. I am in awe of her. She has defied all odds. And her strength continues to give me strength.

We are celebrating Tiny Tickers’ Heart Week this year by holding a party at our house.  Tia wants to help other babies born like her so she is baking lots of cakes. That’s my girl.

Blog contributed to Sarah Cowton, Tia’s mum. 

  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)

Related

Primary Sidebar

Blogs

  • From the Sidelines to the Finish Line
  • The Great North Run: a congenital heart defect hasn’t stopped me running it – twice!
  • Tube dependency – our story
  • The Hebridean Way is “mostly flat”
  • The journey of a heart parent
See all Blogs

Your Stories

  • Transposition of the Great Arteries: Ivy’s story
  • Coarctation of the Aorta: Callan’s Story
  • Francis’ Story
  • Harrison’s Story
  • SVT and Aortic Stenosis: Arthur’s Story
See all Your Stories

News

  • Tiny Tickers supporter to run, swim and cycle 473km to help babies with serious heart conditions
  • Make Some Noise for small charities!
  • The Congenital Heart Disease Priority Setting Partnership: a national strategy to address priorities for children and adults with CHD
  • Tiny Tickers places its 500th pulse oximetry machine
  • Make Some Noise for tiny hearts
See all News

More about...

3vt (1) 20 week scan (1) Adult CHD Stories (6) ASD (13) AVSD (8) cardiac (1) Coarctation of the Aorta (37) collapsed aortic valve (1) congenital heart defects (3) congenital heart disease (3) Congenitally Corrected Transposition (4) Critical Aortic Stenosis (4) Double Outlet Right Ventricle (5) Ebstein's Anomoly (2) hypoplastic aortic arch (3) hypoplastic left heart syndrome (8) hypoplastic right heart syndrome (2) Loss (24) Mitral Valve Regurgitation (1) nominate (1) Parents Blog (15) Patent Ductus Arteriosis (3) PDA (2) pulmonary atresia (6) pulmonary stenosis (2) Pulmonary Valve Stenosis (2) research (1) shone's complex (1) sonographers (2) sonographer training (2) support (1) Supraventricular Tachycardia (3) SVT (1) TAPVC (1) Test for Tommy (5) Tetralogy of Fallot (22) tiny hearts (1) Total Anomalous Pulmonary Venous Connection (TAPVC) (1) transposition of the great arteries (45) tricuspid atresia (2) Truncus Arteriosus (4) Vlogs (2) VSD (40) win (1) yorkshire (1)

Footer

  • Facebook
  • Twitter
  • Instagram

Make a donation

Help us provide a better start for tiny hearts. Make a single or regular donations to help babies with heart defects have a fighting chance.

Donate now

Subscribe to our newsletter

You can change your email preferences at any time. Read how we keep your data safe in our Privacy Policy. 

  • Accessibility
  • Privacy policy
  • Terms and conditions
  • Fundraising Complaints Policy

© 2023 Tiny Tickers • Registered Charity No: 1078114

 

Loading Comments...
 

You must be logged in to post a comment.