Our little girl Alexa was born with rcdh. She lived seven hours after birth & her condition rapidly deteriorated from she was born. 14/06/2018
At our 20 week anomaly scan everything seemed to be going fine until the end when the sonographer mentioned she wasn’t happy with the chest area & went to get another sonographer. When she arrived back they both viewed the chest area together & made comments about one of the lungs having a problem then the other lung & they noticed that the heart was shifted to the left hand side. From this they took us into a side room with a doctor, we were referred for an appointment with the maternity units fetal medicine consultant within about a week.
When we came back on the day of the fetal medicine appointment the consultant was able to confirm it was a right handed diaphragmatic hernia. From this appointment we were referred to the fetal medicine team at the hospital with the regional neonatal intensive care unit, we’re Alexa would later be born & also for a fetal cardiology scan.
The fetal cardiology scan showed Alexas heart was shifted to the extreme right but was working pretty well regardless. They we’re able to explain the role cardiologists would play after Alexa was born in trying to control the blood pressure in her lungs after birth.
We were seen between fetal medicine consultants at both our local maternity unit and the maternity unit at the hospital with the regional neonatal intensive care unit. They were able to establish that her liver was definitely herniated and gave her a head to lung ratio of 0.27. We were also offered an amniocentesis to check for other potential problems, this came back clear.
Late in the pregnancy we were given the chance to speak with paediatric doctors & surgeons about what would happen after Alexa was born & possible outcomes.
Due to the need to make sure a cot was available in the neonatal unit & previously having a c section I was booked in for a planned c section at 39 weeks.
When Alexa was born she was immediately taken over to the resuscitation equipment where a team of neonatal doctors & nurses quietly worked on her. Her dad was able to go over & get a few photos & then she was whisked away up to the neonatal unit.
Once my surgery was finished they were able to wheel us up to the neonatal unit to see her. Our first visit round was brief as I had to go back round to the maternity ward for observations. When we arrived back her condition had deteriorated further. Her right lung had little to no lung tissue & her left lung was very small aswell. At that stage we had to make the decision to take her of the machines so she could pass away being held.
We stayed in the neonatal unit with her for a while. Holding her most of the time & making a memory box with the help of the nurses before we were taken round to a room with a cool cot. We were able to spend two days with Alexa in the hospital, we arranged her funeral & the funeral directors collected her from the hospital just after we left. She came home the night before her funeral & was then put to rest the next morning.
