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Rumer

Rumer 24/09/2015 – 01/01/2016

Rumer was diagnosed with T18 at 23 weeks gestation. We fought for full treatment for her and won. She had a happy life, she loved stories, songs, baths and cuddles. She died in intensive care aged three months from multi organ failure secondary to infection and pulmonary hypoplasia.

At 20 weeks gestation, Rumer was diagnosed with suspected diaphragmatic hernia, subsequently an echo scan, revealed apparent complex structural heart defects and an MRI showed vernis hypoplasia. We had an amnio and at 23 weeks got the T18 diagnosis and found out she was a girl.

Our initial thoughts were around stillbirth and neonatal death, we planned a grave and an undertaker, however with more research we realised active treatment does benefit babies with T18 and we asked for it, it was a long fight but we eventually got agreement for full neonatal care including ventilation.

Rumer was born crying and was ventilated an hour after birth, three days later she was off the ventilator and then spent three weeks weaning off breathing support. Her heart problems had improved during pregnancy and eventually she only had a PDA and small ASD. Her diaphragm problem turned out to be a diaphragmatic eventration. She did however have very small lungs due to that. At three weeks breathing independently she was ready to go home however we were offered gastrostomy surgery and accepted. We are so glad we did, it improved her quality of life beyond measure. At the discharge meeting from neonatal we got agreement for full treatment from the entire children's hospital including PICU. We had been concerned this approach would not continue.

We went home, then five days later Rumer had an apnoea and we ended up back in hospital for two weeks for investigations, went home briefly before being readmitted due to an infection. Sadly a month later Rumer died without going home again. We have no regrets about Rumer's life, she had a good quality of life even in the hospital, with cuddles, baths, songs, stories and lots of attention. She got the best medical care and we can at least feel confident we did everything for her, we possibly could. We would do it all again. While we miss her everyday, she is buried in our back garden and with us always.

SOFT Child

Rumer

Condition: T18
Relationship: Mother