Rosie is mine and my husband’s second daughter, born on September 16th at 11.21am via section, weighing 4lb 10oz. Her story is not a simple one and our pregnancy wasn’t easy.
Our pregnancy with Rosie was a surprise! But after the efforts it took to conceive her sister we were so happy. Our first scan was March 17th and everything seemed perfect, we were given a due date of 24th September and couldn’t wait.
We decided to have a scan at 16 weeks to find out if Pippa was going to have a brother or a sister. This was booked for 10th April and we were excited! We never imagined what the rest of the day would hold, starting with the words "I think this baby has something wrong with it". The sonographer couldn’t say for sure what it was so we were sent for a more detailed scan which confirmed that our baby had short arms and legs and a 'barrel shaped chest'. Skeletal dysplasia was diagnosed. We had our first appointment with a consultant at 17 weeks where we were told the words 'thanatophoric dysplasia' meaning 'death bearing'.
We were obviously completely devastated. The consultant sent us away with a decision to make of whether or not to continue with the pregnancy. I didn't tell many people but when I was pregnant with Pippa I had a dream that I had a baby girl and she was born with short arms and legs. It was actually happening. We decided we couldn’t end the pregnancy. I had felt her move and I just couldn’t end it.
We continued to have monthly checks. Later tests confirmed that she didn’t have Thanatophoric Dysplasia but the consultant still believed her condition to be terminal.
Once we got to my 35 week appointment we had to decide whether to have a normal delivery or a section. The doctor’s advice was to have a normal delivery with no monitoring as he believed the outcome wouldn't be good. In the dream I mentioned the baby was born by section, so following my instincts again, this is what I decided to do.
We made it to our C-section date on 16 September. As we went to theatre we were so terrified at what might happen. At 11.21 our gorgeous princess entered the world. We were quickly shown her and then she was whisked away. After 4 minutes our doctor came back and told us that she had made an effort to breathe, her heart rate was good and that they had managed to get an airway down her. She was still worried about her as she said her chest seemed very small and we needed to take it a bit at a time. She took her to the neonatal unit and Jonathan went with them.
Once I was in recovery Jonathan came back with photos of our perfect little girl. I couldn’t believe how beautiful she was and how alert she seemed. We named her Rosie Jo, she weighed 4lb 10oz.
After three hours I couldn’t be kept away from Rosie any longer, I was just aching to see her. As soon as I saw her I just burst into tears. She was looking directly at me and held my finger as soon as I put it in her hand. She seemed to be doing so well, she was ventilated but on minimal oxygen. Later that day she had x-rays and scans which showed us that she had small fractures in her arms and legs and multiple fractures on her skull, which was extremely thin. Our doctor suggested it wasn’t skeletal dysplasia but Osteogenesis Imperfecta. I was so scared to touch her following that discussion, but they reassured me that gentle touches wouldn't harm her.
I expressed some milk and she was given it through a line in her tummy, then I was shown how to give her some via a swab into her mouth, and she sucked the swab, so amazing to see.
That afternoon and evening Rosie had the privilege of lots of family and friends. They all got to see her sparkly eyes and for that I will forever be grateful. I went to bed that night, so hopeful that she would continue doing well.
I was woken up at 7am by a midwife who said that the doctors wanted to speak to me. I was terrified. We got to Rosie and I was told that they had had to increase her oxygen to 100% and change the type of ventilation they were giving her. It made her whole body shake.
Once Jonathan arrived our doctor came to speak to us and gently told us she didn’t think there was anything else she could do. Her chest was just too tiny to cope and wouldn’t be able to support her. She was also diagnosed with Osteogenesis Imperfecta. The devastating decision had to be made to remove her ventilation later that day.
From that moment we had Rosie out of the incubator and cuddled, kissed and loved her while she was still with us. Those few hours are the most precious of my life and I will treasure them forever.
We chose to have Rosie christened whilst in my arms and surrounded by lots of family. Everyone there then had a treasured few minutes holding and cuddling Rosie. Jonathan, Rosie and I then spent precious extra time together, just the three of us, before they removed her ventilation. Rosie stayed with us for a further 30 minutes and then fell to sleep at 15.30, 28 hours after she came into the world.
Rosie changed our lives in those hours she was with us and because of her, our hearts will be that much fuller and our lives that much more enriched for having her join our family.
For the following week it meant so much to be able to be with her until we had to say our final farewell. We were able to hold her and kiss her until the day we said goodbye.