Rumer's Story, part 20

Neonatal & Palliative Care meeting: II

Thursday 2nd July 2015
27 weeks pregnant

Keen to bring the discussion back to treatment options, Chris proceeded to describe our understanding of the pregnancy risks and how we wanted to mitigate them (eg. close monitoring, c-section). He wanted to show our thinking about how to manage the obstetric problems, since that was what we were most familiar with at this point, thinking that that would give Ida an idea of the general approach we wanted to take in order to set the tone for the discussion about postnatal management. He also wanted to illustrate that we were realistic about the high rates of stillbirth and neonatal death; that we were going into this with our eyes open.

Rumer's Story, part 17

Cardiology appointment

Tuesday 30th June to Wednesday 1st July 2015
26 weeks pregnant

So on the Tuesday, we went to our second cardiology appointment. Recalling how Professor Marshall had been happy to consider surgical options even in the most dire of situations last time, we were hopeful that he would remain open to considering these and other relevant treatments. However, we also knew that offering active treatment for babies with trisomy 18 was not usual practice in the UK, and we weren't sure whether the diagnosis would change his approach.

Rumer's Story, part 6

Echo & MRI results

Tuesday 26th May 2015
21 weeks pregnant

We were shown into the quiet room by Dr Cook, where we were joined by Evan Marshall and a cardiac liaison nurse who was introduced to us as June Winter.

Professor Marshall explained the scan findings: our baby had her heart shifted to the right side and rotated. Her left ventricle was around half the size of her right, whereas they should be roughly equal. She also had a narrowed aortic arch through which the blood flow was reversed, and she had two superior vena cavae ('bilateral SVCs'). All embryos start with two, but by this gestation you would expect one to have disappeared. He drew a lot of sketches.

Rumer's Story, part 5

MRI scan and echocardiogram

Friday 22nd to Tuesday 26th May 2015
21 weeks pregnant

We spent the weekend googling information on Congenital Diaphragmatic Hernia (CDH) and calling family to update them. We were both worried and surprisingly normal. I remember reading all the survivors' stories on the CDH website and then braving reading the stories of the non-survivors and crying. It was a long bank holiday weekend.