A long road ahead: Oscar's story
November 04, 2022
During pregnancy, mum Teigan and dad Dan were told by doctors that their baby, Oscar, would be born with a ‘chromosome abnormality’. All signs indicated that he would simply be born very small and there was nothing to really worry about. Teigan gave birth on 17 January 2022 at Coventry University Hospital and Oscar immediately had trouble breathing by himself and was swiftly taken away. Investigations showed that his tongue obstructed his airway due to his jaw being smaller and positioned further back. Oscar was transferred to Birmingham Children’s Hospital and Teigan and Dan were soon introduced to the ‘amazing’ Ronald McDonald House Birmingham.
Guest blogger: Teigan
When I was pregnant with Oscar, I had three amniocentesis tests that confirmed that he would be born very small. It wasn’t until Oscar was born that we discovered that he had other medical issues that would affect him. I had to have an emergency c-section and immediately after he was born, it was clear that he couldn’t breathe properly and couldn’t maintain his oxygen. He was taken away from me and I didn’t see him until 12 hours after he was born. We didn’t know if he would survive or not and it was really scary – especially being a first-time mum.
At seven days old, Oscar was transferred to Birmingham Children’s Hospital and was admitted to the neonatal surgical ward. He was born with a cleft palate and diagnosed with Pierre Robin Syndrome, which is when a smaller jaw size and the tongue position can result in trouble breathing and problems feeding. Oscar’s jaw is positioned further back than it should be, and his tongue obstructs his airway.
They put in a nasopharyngeal airway (a tube inserted through the nose) which he still has to this day to maintain his airway and stops his tongue falling into his throat. Oscar has always been tube fed because of his medical conditions and has never been fed orally. He also had to undergo a lot of sleep studies and tests to make sure that his oxygen levels were consistent.
Being at a hospital not close to home was difficult for many reasons. We were 30 miles away from our home in Hinckley, which meant we would have to complete a daily round trip of 60 miles to be at the hospital and the fuel costs were becoming ridiculous. Oscar’s dad, Dan, works for the ambulance service and works nights, meaning he would constantly have to travel back and forth. Oscar’s half-brother, 14-year-old Reece, was also back at home and had not been able to meet him due to the covid restrictions in place on the ward.
Ronald McDonald House Birmingham offered us a room, and this was a huge relief to us all. Not having to do the huge journey back and forth meant that I could stay late at the hospital with Oscar, go straight to bed after and get up in the morning ready for another day. There were times I cried because I didn’t want to leave Oscar on the ward, but the nurses would remind me that I was staying just across the road at the House. They reassured me that I would be fine, and they would call if I was needed. It was so comforting and lovely to be that close to him at any time.
I remember my immediate thoughts entering the Ronald McDonald House – it was just so nice. The staff at the reception desk were smiling and so welcoming. If they ever saw me upset, they would instinctively ask how I was, and they genuinely cared.
The House was always so clean and tidy which felt warm and accommodating. The staff were always kind enough to make sure we had everything we needed, such as when Reece came to stay with us, they would make sure we had the extra bedding for him. It was great that Reece was able to come and stay with us too, even if he was unable to visit Oscar. Just having the opportunity to be together as a family and support each other during this time was amazing.
There was a real sense of community in the House too. I remember another family on our floor who used the communal kitchen areas, and we became friendly with them. The dad was planning to leave and go back to work in Wales, and he asked me if I would keep an eye on his wife for him when he was away because she was really struggling – I said yes, of course. These spaces in the House gave us an opportunity to have quiet space to talk and connect with others who are going through difficult situations too.
Our first stay lasted for about six weeks and Oscar was finally discharged. Oscar needed to have regular home oxygen studies going forward and one set of study results came back really bad. They indicated that he could be at high risk of cardiac arrest, and we would need to take him back to hospital immediately.
Upon returning to Birmingham Children’s Hospital, my thoughts turned to Ronald McDonald House straight away. I insisted that the paperwork was completed as soon as possible to get a bedroom again as I couldn’t bear the thought of having to complete the daily 60-mile journey again. We were fortunate enough to get a place at the House very quickly, which came as a relief.
Oscar was born club foot (also called talipes), which is where a baby is born with a foot or feet that turn in and under. Both of Oscar’s feet are affected and he has to wear special boots attached to each other with a bar– a manipulation method to correct the position of his feet. It turned out that his boots and bars were in fact the cause for his breathing problems again. Oscar would usually sleep on his side but due to the bar, he was having to lie on his back causing his tongue to fall back. It took around two weeks for the doctors to analyse what part of his feet were preventing him from breathing properly.
Since that hospital stay, Oscar has been discharged and we have been told to expect another admission soon. If Oscar was to become poorly, such as with a cold, because of his low threshold he will need to taken back in and given oxygen as soon as possible. Therefore, we expect to be using the Ronald McDonald House Birmingham again in the future.
I now tell people about Ronald McDonald House Charities UK that may not have heard about it before, and I let them know that it’s an absolutely amazing charity. I have even posted a fundraiser for my birthday on Facebook and that raised £168. Now, when any of my family go to McDonald’s restaurants, they always roundup their orders to give something back. A lot of families, including us, didn’t know what the Charity did before we had our experiences with Oscar and to see first-hand where the money goes is incredible. You see that the Charity has a real impact on families going through the most difficult of times.
Oscar has not yet had surgery for his mouth yet, which will most likely happen next year. There is still a long road ahead of us, but it is made better thanks to our family and friends and knowing that the Ronald McDonald House Birmingham will be there to support us along the way.