Ronnies Journey

2nd September 2021: 20 week scan day and we are all excited and happy to see little one and find out the sex of the baby. Everything was going so well, all measurements perfect and little one was kicking the probe and moving around. We are both so happy that everything so far was good and looked normal. Then the sonographer was looking at his back and kept measuring and looking before looking at the head again. It all went quiet and we both knew that this wasn't normal why does she keep measuring and checking those areas. Then the sonographer said it to us that she had picked up a problem with his back and a cyst lump is present. We went quiet and looked at each other shocked and not knowing how to feel. The sonographer then got a colleague in the room to double check. A cyst on the back is present although difficult to see and we then went into a different room to wait and see a specialist midwife regarding the issue. We didn't speak with each other and didn't know what to think, our emotions are everywhere at this point. The room felt so small that we couldn't breath and then the door opened with the specialist midwife entering the room. What she was saying to us we new very little about, Spina Bifida!, we were speechless.................  then we both cried into each others arms before leaving and getting into our car. We went home in turmoil, how were we going to tell our families and our older children that our baby has Spina Bifida.

Telling our family and the older children that something is possibly wrong with our baby was the hardest thing to do. We cried, we all cried, it was an extremely hard and difficult time for us all but especially for Sarah as Ronnie's mother. She felt responsible and extremely upset and kept blaming herself, Karl felt lost and helpless, unable to help at all. Next thing for us all was to await for an appointment at Addenbrookes hospital so they could scan the baby and then tell us what was really wrong with him and a chance for us to ask questions and try and get the answers we so badly needed  It was tempting to try and do our own research, although we got told that it would be better to wait until our appointment with the consultant at Addenbrookes. The wait for the appointment was horrible, two weeks we waited and it was all so difficult and emotional. When we had the appointment the consultant scanned Sarah and then we got asked to wait in another room where he was going to give us some results. He confirmed that our baby had a lower grade lesion and that it was Spina Bifida and currently wasn't showing any signs of issues with his brain. He made us feel optimistic about the whole thing and we came out actually not as bad as we thought we would. We got told that lower lesions have a better outcome in everyday life and he asked us to attend an MRI appointment with Ronnie with the results being sent up to Sheffield and reported back to us within two weeks. The wait was on ..............................................  

So here we are, first results after the first MRI scan that was taken. We got taken into a room with four doctors who explained the MRI results to us in simple and easy terms. At the moment it appears that Ronnie's brain isn't developing properly and that the prognosis for when he is born means his quality of life isn't going to be very good. We asked if we could have another MRI scan in two weeks again to see if anything has changed which they agreed we could do. Sarah then had an Amniocentesis to check for any other possible abnormalities present and we also had to await for the results from that test, the stress was building up for all of us. It was very hard to carry on with normal life but what other choice did we have,? we had to for our girls and tried and keep them happy and positive. Those weeks seemed to take for ever and we didn't go a day without more questions between us and worries, eventually we were back at hospital getting the results of the Tests. The results were  inconclusive and we were told that we could have another MRI scan in four weeks. Another 4 weeks of worry but we wanted to try and give Ronnie one last chance before any further decisions were made about him and his future. Termination was always an option given to us but we wanted to fight on and give our son a chance.

So before we made that last crucial decision we had a little holiday with our little man. We made memories with our family on that holiday and tried to make it as normal as possible for the girls, however Ronnie was always in our minds. What if his brain hadn't developed? How would we cope ? How could we make the hardest decision of our lives. We spoke about what we wanted at his funeral and how we wanted it to look and everything if things didn't work out. We planned his music, we planned his coffin and what he was going to wear. This was so difficult for us, we tried to have a good time for the sake of our girls but it was difficult, very difficult and emotional. Life would never have been the same for us again, just heartbreak and trying to get through it all with each other.

Very proud mum and dad looking over in his scrubs at newly born Ronnie.

Finally, we got to bring this little warrior home, his sisters could not wait to see him and hold him for the first time. It was very emotional leaving NICU at Addenbrookes to drive him home to see everybody. We were both still extremely nervous about the lump that was still present on his back, and we knew everyone would feel anxious about holding him. He slept all the way home with no problems at all until he is wanting feeding, we all knew about it then.

Surgery was complete so off Sarah went to go meet Ronnie in recovery whilst I made the long journey home to see the girls. Ronnie was in surgery for 8 hours with some of the best neurosurgeons around in the country and had some other specialist equipment with involved probes going down his back to see which nerves are functioning and which are not. Sarah spoke with Dr Holland after the surgery, and she stated that it went very well with no issues at all and that she waited for Ronnie to wake up some more to make sure all his limbs where still moving which of course they were thankfully.

So, after about three months after his operation. We went to the Physio Department to discuss Ronnies Talipes and what the next process will be with regards to his feet. Physios Hannah and Jenny at Addenbrookes were fantastic. They discussed with us that he's feet will need to be in casts for approximately Six weeks. Me and Sarah were very anxious about this because Ronnie likes to move his legs around a lot and was starting to bend his legs freely and kicking around the whole time. We were concerned about how much this would restrict his movement and how this would impact on his muscles due to the casts being up his legs. The whole purpose of the casting was to make his feet more flexible and put them back into the position where they should be. Ronnie was very good when the casting started. He was well behaved, with a little help from having a bottle of milk at the time. He just laid there and let Hannah get on with it. After a while he realised, he couldn’t move his legs, and this did make him upset. First night he was very upset due to not being able to move his legs as freely as he would be able to normally. Ronnie soon realised that he could bang his legs around and still have a little bit of movement with them, so he was a lot happier with that. We went back to Addenbrooke's for his casting every week and after the first week we noticed a difference with his feet. By the end of the six weeks, his feet were in the position where they should be, which will help him be able to mobilise in the future and be able to walk around. Next thing he would require is special boots with a bar across his feet to keep him in the same position for up to 23 hours a day. For a month to six weeks after that, it went down to just nap and night-time. This could be up until the age of three or five.

Ronnie went on his first little Christmas trip and getting in the mood for the festive season. He loved looking at all the pretty lights and getting down to touch some of the decorations. His face was a picture looking at everything and was smiling the whole time. Its a beautiful place at Poplar Nurseries and a place we have been going too for years with the girls and now Ronnie has experienced it for himself. Such a shame that you can't go walking around to see Santa anymore. This has been stopped because of the dreaded COVID over the last couple of years. Such a shame for all the children. Although you can book to see him whilst you go for breakfast !!!

Ronnie enjoying his first time in the paddling pool with two of his sisters. He loved doing this especially during the very hot summer that we had so he could cool off. He loved kicking his legs around and just floating around the pool taking everything in. We thought it was good physio for him working against the water which caused him some resistance and help strengthen some of his lower muscles. He always got very tired afterwards and wanted a sleep though. He loves being with all his sisters just like they love being with him. Always Brave, Always Happy, Always Smiling, Our Warrior.