Lily’s Story


10 weeks
Our first ever scan and we saw her little heart beating. We were told we should have been expecting twins, but one hadn’t made it. There was no little heart beating in that sac. But the other heartbeat was strong.

28 weeks
Despite thinking I just had tummy ache, Jon convinced me to call MAU. We go in for assessment. Fast forward 3 hours and we’re being rushed to Kettering by blue light ambulance after being told I was heavily contracting and the swab tested positive for labour.  Contractions worsening so given a drip to slow contracting as well as the first steroid injection.
12 hours later after pethidine, more steroids, and more drips, and meeting NICU specialists, the Kettering labour ward staff bring the contractions under control.

Given scan and find baby measuring 6 weeks behind. Remain on labour ward for 3 days before being transferred to maternity ward. 2 days later we are discharged home but referred back to local hospital.

The next morning we are invited straight in for a follow up scan. They find my waters had broken in the labour and readmitted straight back to the ward for assessment, scans and a course of antibiotics. Introduced to NICU specialists to say what is likely to happen to Lily when she is born and possible complications.

31 weeks
After daily doctors debating on whether we should deliver her, I’m finally discharged home but on the request I return twice a week for blood tests and scans. Baby measuring 6 weeks behind so offered investigatory tests which came with risks, so we declined – we wanted no more risks, she was our daughter no matter what.

32 weeks
That only lasted a week. They decided her long bones were too short, she was sideways and there was so little fluid around her that there was nowhere for her to grow. She was going to be delivered by Caesarian at 33 weeks. Caesarian papers signed and told to come in Monday.

33 weeks
For 5 days we were being deferred, sent home, promises of being sent elsewhere, all due to a lack of neonatal cots. Finally they delivered Lily Grace at 11:37am on July 2oth 2015. She was perfect.

No issues or complications that we’d been warned about. Slight jaundice and issues with her feeding that needed to be brought under control, but we could be both monitored on the ward together, with Lily taken down to NICU every 12 hours, rather than having to be kept down there.

After her feeding was more under control and my blood pressure stabilised, we managed to both return home just a week later – 5 weeks earlier returning home than they’d predicted. She was 4lb2oz when we arrived home the day before my own birthday. We had incredible support from Leicester midwives and health visitors several times a week to support her feeding and weight gain.

6 weeks old
A brown then red mark started appearing on her eyelid. It started getting redder, then bluer underneath. The health visitor suggested taking her to the doctor. The GP said to just monitor it.

8 weeks old
We were referred to a birthmark specialist at Great Ormond Street Hospital. She was told she had a hemangioma – a type of benign tumour of the blood vessels. And it was deep, so the concern was it would keep growing and putting pressure on her eyeball, affecting her developing vision. She was started on a medication to reduce the growth.

3-5 months
Being so tiny, she didn’t react well to the medication and she had many returns to the hospital over the following months. When surgery seemed like the only option, and the tumour was covering much of her eye, they tried her on one final medication.

April 2o16
Within 2 weeks we could not believe the difference in her eye. The part of the tumour under he eyelid had already started shrinking, and the red part on top of the lid went paler. Now, you can barely notice any difference in  the shapes of her eyes it has shrunk back so much, with skin starting to grow back over the top. We are due back next month and hope they are as pleased as we are with the results.

Great Ormond Street
We cannot that the staff at Great Ormond Street hospital enough for everything they have done for our little Lily.

Every time we step through the doors of that hospital it breaks our hearts seeing all the poorly children, so we recommend so grateful to all the staff for not only helping Lily get so much better, but for treating us like an individual from the moment we arrived on that first day. They remember us by name on every visit, despite the huge numbers of patients they see, and just make us understand the reasons why they do everything, making sure Lily has been checked thoroughly for all complications at every stage. The senior nurse even gave us her email address to contact at any time with any questions and she’d always get back to us day or night at any time with reassurance or changes to her treatments, without us having to come in. We are truly grateful to the NHS and the GOSH teams for your amazing work.

Leicester Hospitals & Surestart
Thanks also needs to go to the teams at the Leicester Royal Infirmary on both the maternity wards as well as the NICU. I remember a nurse saying to me she was so genuinely happy to see Lily so strong at birth as she hadn’t held much hope for us when we were there at 28 weeks. He hospital had to regularly close due to lack of beds and although we were sent elsewhere or deferred, we can’t thank the staff enough for the fast reactions to stop the labour and start steroids at 28 weeks, the fetal Medicine specialists who supported us through the journey, right to the amazing nurses on both the maternity wards and in the NICU. The postnatal care you gave both myself and our tiny little girl was just incredible.

Finally I want to thank the Leicester surestart midwives and health visitors for helping us transition home with such a tiny baby, and ensuring we were looked after til she had got strong enough for us to fly solo. Thank you.