On Thursday 6th January, 2022 we welcomed our gorgeous baby daughter Brooke into the world. We were only in hospital until the following day when she was discharged to come home.
A few days later however, we were becoming concerned about her feeding and arranged a visit with the midwife at Doncaster hospital. It was discovered that Brooke had lost 10% of her body weight and was slightly jaundice. As a result she was referred to the children’s hospital for further checks. Her oxygen levels were also lower than normal and she was kept in for observations for a period of three days, during which an echo scan discovered a suspected leaking heart valve. The consultant arranged a follow up appointment for six weeks later as a precautionary measure as her heart was small making it difficult to examine thoroughly.
Following her discharge, Brooke was feeding well, was gaining weight and generally was very well. However, a week or so before her outpatients appointment, Brooke started going off her food and was sick on several occasions. At the appointment, it was discovered her oxygen levels were low again, under 78%, and an echo scan revealed the suspected leaky value had got worst which was a concern for the consultant who promptly admitted her to Doncaster Children’s Hospital.
The following day another echo scan was performed in consultation with a member of the specialist heart team in Leeds who were viewing the live images. It was decided Brooke would be transferred to Leeds General Infirmary (LGI) on the high dependency unit (HDU) for further investigations that afternoon.
On arrival Brooke’s observations were all checked and found to be normal. She had a feed and was settling down for the night, but half hour later everything changed. Her oxygen levels started dropping rapidly and the crash team were called. The doctors performed an emergency intubation as she became critical and was transferred to the paediatric intensive care unit (PICU) where she was made stable whilst they established what was causing her condition.
“Upon arrival at Eckersley House it was soon clear that the facilities were amazing and there was an immediate ‘Home from Home’ feel which was perfect.”
As you can imagine the situation was extremely traumatic for both my partner, Karen, and I. We were taken to the relatives room and told that Brooke was very poorly but she was stable for the time being and that she was in the best hands. The situation was compounded by the fact we were an hour away from our home in Doncaster and our support networks as well as being late in the evening.
The following day Brooke had a CT scan and diagnosed with Total Anomalous Pulmonary Venous Drainage (TAPVD). This causes the veins from the lungs to attach to the heart in abnormal positions and means that oxygenated blood enters or leaks into the wrong heart chamber. Brooke needed emergency open heart surgery to correct the abnormality. Plans were made to perform the operation that evening if Brooke deteriorated, however she managed to remain stable throughout the night and the surgery was performed the next morning.
The whole trip to Leeds was totally unexpected and we found ourselves in unfamiliar surroundings with our precious daughter lying in intensive care requiring an emergency heart operation with no idea of where we would be spending the night. Fortunately, we were offered the use of emergency accommodation on the hospital site which was gratefully accepted. We ended up staying two nights in the room which was very basic but nevertheless was invaluable and we were very grateful for the room.
We were then approached by the nurses and told we had been allocated a room if we wanted in Eckersley house. We had no idea what or where Eckersley House was but was amazed to discover that it is a ‘Home from Home’ ran by The Sick Children’s Trust which is located literally adjacent to the hospital and where our precious daughter was lying fighting for her life. Upon arrival at Eckersley House it was soon clear that the facilities were amazing and there was an immediate ‘Home from Home’ feel which was perfect.
I think that both Karen and I actually managed to get some sleep that night for the first time in three days. We remained at Eckersley House for ten nights whilst Brooke recovered. It’s location and facilities made the traumatic situation bearable and to date I have no idea where we would’ve stayed or what we would’ve done without it. We honestly considered sleeping in the car as an option as there was no way we would be leaving our daughter alone and hotels were ruled out just in case we needed to be with her at very short notice. The on-site laundry allowed us to refresh our clothing which again along with the kitchen facilities was invaluable as we didn’t go home until we all finally left together.
Brooke recovered amazingly well following her surgery and four days after was transferred back to the HDU where her recovery continued. Three days after that she was transferred to the ward where she remained until finally being allowed home three days later, much to our relief.
Since leaving Leeds, Brooke has continued her excellent progress and has attended two follow up visits to the LGI. She will need checks ins for the rest of her life but have been told should be able to lead a normal life. We will be forever grateful for Eckersley House and would like to thank The Sick Children’s Trust for providing such facilities for parents who are thrown into crisis.
David and Karen Henderson, Brooke’s parents.
