Ava-Violet Gilhespy



Ava-Violet, my precious daughter

Kay's daughter Ava-Violet was diagnosed with Trisomy 13 while in-utero. She lived for 16 days after birth. This is her life


 "Two roads diverged in a wood,
and I ~ I took the one less travelled by,
And that has made all the difference."

 

Robert Frost

 

Hearing the news

I never quite felt settled with this pregnancy, it was my fourth time around, but something kept niggling at me. My world came crashing down during our dating scan, I had gone alone as my husband was a deployed Submariner. How could something be wrong with our precious baby?

I was seen the following day by the Feotal Medicine Unit at the RVI in Newcastle. My sister in law came with me, she was a trainee midwife so had some understanding of what was happening. She held my hand through the scan and CVS testing, kept trying to reassure me that everything would be ok. My bloods had come back as 1:5 for T21 and 1:2 for T18/13, I needed to know which one our baby had.

Four days later, the results were back. Trisomy 13. I'd never heard of this condition, but the words 'Incompatible with life' were bouncing around in my head, my world fell apart, I needed my husband.

Over the next few weeks more complications arose. Cystic Hygromas, Hypoplastic Left Heart Syndrome, Exhomphalus, Spina Bifida, Dandy Walker Syndrome....they must be wrong! My husband had been sent home on compassionate leave, finally he was here to walk through this with me. 


"The words 'incompatible with life' were bouncing around my head, my world fell apart."

 

She was our baby, she deserved a chance

Multiple times we were told to terminate, every time I said NO! She was our baby, I was her voice, she deserved a chance! As more weeks went by, researching all these conditions and demanding proof, one by one they were disproved. She didn't have Spina Bifida or Cystic Hygromas, and at 29 weeks, after demanding a repeat heart Echocardiogram she was confirmed as no longer having Hypoplastic Left Heart Syndrome! Instead they believed she had Coarctation of Aorta and a large VSD.

So many tears were shed in my fight to get her a team in place to give her a chance, I pushed for cardiology to consider her for treatment, they had never had a baby with her Syndrome referred. Many meetings later they said they would assess her if she made it to birth. Neonatal were onboard with providing full intervention, including ventilation.

At 35 weeks, on 26/02/2015 I went in for extra CTG monitoring at my request, my world came tumbling down again. I was in silent labour, her heart wasn't coping and they needed to get her out to give her a chance. I was on my own, my husband was 3 hours away! My Sister In Law came running to be with me, she held my hand the whole time.

My daughter Ava-Violet, was diganosed in the womb with Trisomy 13. She lived for 16 precious days

Thank you Mam, for loving me...

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Getting to know and love you

 Our precious daughter was brought into the world trying to cry at 15:44pm weighing 4lb 10oz, she was fighting! NICU were there and helped establish breathing.....she was alive! On her way to NICU they stopped so I could see her, she laid in the incubator with a green knitted hat on, looking towards the ceiling. I called to her 'Ava, Mummy is here, I love you so much, hold on', she turned her head and looked at me, she was a fighter.

She was transferred to NICU where she surprised so many. They believed she would need intubating that night, but come the morning she was on a nasal prong! She was doing so well, our tiny fighter.

She was later transferred to the Cardiac Hospital at the Freemans in Newcastle, where they took over her care. She was scanned daily to assess her heart, and again they were wrong with her diagnosis as she had no Coarctation, but a VSD and ASD.

We spent two weeks in hospital, getting to know her, she was fiesty, loved music, hated nappy changes, everyone who met her fell under her spell. We were given the go ahead to take her home, We were so excited. Everything was arranged, we took all our things to the car and went back to get her ready. But she took a turn and suffered a major apnoea spell when we were gone. We came back to find her in the hands of her consultant, surrounded by cardic nurses. We were told she wouldn't make it through the night.

My daughter Ava-Violet, was diganosed in the womb with Trisomy 13. She lived for 16 precious days

I'm so special. I have extra toes!

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Precious time spent with you

That night we had her Blessed and cuddled her, telling her how much we loved her... come morning she was still with us!

We decided to take her home, oxygen was installed and NICU transferred her. We spent two wonderful days at home with her, it was magical! We danced, we cuddled, we were where she belonged, together.

On the evening of 14/03/2015, another major apnoea hit, she was laying on my chest when I noticed her go limp. We worked on her while waiting for an ambulance and got her breathing as they arrived and once stabilised she was loaded up and rushed to hospital.

En route her heart was struggling, she stopped breathing again and her heart rate slowed drastically. The paramedic worked on her breathing as I massaged her chest. Again we got her breathing as we reached A&E. She was rushed to re-sus, where they did everything they could, but her heart was failing and so was her respiratory system. When they told me I collapsed to the floor and was caught by my husband. They had to be wrong, we couldn't loose her!

I wanted my baby, so we took the monitors off her and I scooped her up, she needed her Mumma!

My daughter Ava-Violet, was diganosed in the womb with Trisomy 13. She lived for 16 precious days

Am I not cute in my green hat!

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"I miss her with every fibre of my being..."

My daughter Ava-Violet, was diganosed in the womb with Trisomy 13. She lived for 16 precious days

 

Saying Goodbye

We were transferred to a quiet room, we talked to her, cuddled her, cried, sang to her. Early hours of Sunday 15th March she took her final breath....Mothering Sunday, my baby gained her wings.

I miss her with every fibre of my being....

The evening of her passing, a Remember My Baby photographer came out to the chapel of rest. The images she took will be treasured forever, I cant thank her enough.

I now help raise awareness of the Charity that supplied us with such wonderful photographs.

No one should have to go through this heartache, but I would do it all over again if it meant I got to see her one more time. She was worth the fight, she deserved a chance....

My daughter Ava-Violet, was diganosed in the womb with Trisomy 13. She lived for 16 precious days

Ava-Violet Laura Gilhespy 26/02/2015 ~15/03/2015. Precious Daughter and Sister xxx


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TRISOMY 13 or PATAU'S SYNDROME arises because of the presence of an extra chromosome. There is a significant risk of miscarriage but research has also found that children with Trisomy 13 or live on average for 7 days after birth, while almost 31% live for more than a month, and almost one in 10 live for more than a year. 

Rasmussen SA1, Wong LY, Yang Q, May KM, Friedman. Pediatrics. Population-based analyses of mortality in trisomy 13 and trisomy 18. 2003 Apr;111(4 Pt 1):777-84.JM. http://www.ncbi.nlm.nih.gov/pubmed/12671111

My daughter Ava-Violet, was diganosed in the womb with Trisomy 13. She lived for 16 precious days
Links

 

Ava-Violet Personal Page

Chronicle Live: Family's loss captured in special photographs

Daily Mail: Mother posts heart-rending photographs

MagicMum: Stunning photoshot with child who passed away

Mummypages: This mum posed with her baby and the results are beautiful

International Trisomy Support