Our beautiful daughter Milla Alyce Gooch arrived into our world on Tuesday, 9th July, 2013. This day was the most amazing day of our lives – full of emotion and so much love for the blessing we held in our arms. This day was the beginning of our lives as a family but also the beginning of Milla’s journey with Tibial Hemimelia.
Milla’s condition was identified at our 20 week scan. We had gone into this appointment thinking that we had nothing to worry about as everything seemed okay at the 12 week scan – we were so excited to find out the sex of our baby and were thrilled at the news that our little baby was a girl! Concern started when the lady conducting the scan mentioned that there seemed to be something abnormal with our baby girl’s right leg. From what could be seen it looked like she had a club foot (talipes equinovarus). We were a little upset, however we knew that this was nothing too severe and was easily fixed. We were referred to a specialist for more comprehensive scans to be carried out. We had these scans conducted and there was further concern with not only Milla’s leg but also her heart and we had one of the senior cardiologists from the Royal Children’s Hospital assess the scan further. The results on her heart showed that there was no need for concern, all seemed well and we would just need to have her heart checked when she was born. Saying we were relieved to hear this is an understatement! It was recommended that we have more scans the following day just to get a clearer view of Milla’s leg as her positioning was not ideal.
The next round of scans provided us with a much better view of Milla’s right leg and it was confirmed that things were a little worse than a club foot. Milla’s right foot was deformed she was also missing a bone in her leg. The specialist advised that it looked to be her tibia but could not be 100 per cent sure. He was also concerned that her foot might be severely deformed. We were devastated, shocked and worried. We had no idea what we were dealing with, we had never heard of anyone missing a leg bone. We were informed that there could be a lot more wrong with Milla, so an amniocentesis (test of the amniotic fluid) was recommended immediately to understand if there was any specific condition or genetic issues with Milla. There was risk of losing her by having this procedure but we felt that we needed to understand what may have caused her condition and if there anything else wrong with her. We wanted to be prepared.
That day and those few days following were some of the most extreme emotions we have ever had to manage. We were unsure if our baby would survive after the amniocentesis and I was wondering what I did to cause this?
We searched for answers and looked for causes which lead to more questions and feelings of guilt. I wondered what impact this would have on our marriage. Could we hold strong through this? Had I let Shane down? Will we need to sell our house to pay for treatment? Will she be bullied at school? Can I deliver her naturally due to her leg being deformed? Can she wear the baby suits with the legs? How will we cope seeing her in pain? These are just some of the many questions we were facing and what we might be facing in one year, five years or even twenty years into the future. We had no certain answers and we knew we wouldn’t know until she was born. It was overwhelming. Our heads were spinning. We were experiencing a form of grief and shock trying to manage something so unexpected.
Although we are blessed with a strong network of family and friends we felt that no one could understand how we were feeling and no matter what they said, nothing was really easing the impact this was having on us. We just couldn’t help but wonder why this happened to our little girl.
Thankfully results came back showing no genetic disorders or any other issues. There was no explanation for Milla’s missing bone. Throughout this time we had been searching the internet to try and understand what Milla’s condition was; what the cause could be and if there was treatment. We discovered both Fibula Hemimelia and Tibia Hemimelia. We knew Tibia Hemimelia was a one in one million chance and we could not receive a one hundred percent confirmation until she was born.
The months leading up to her birth were spent trying to plan ahead about what we needed to do and what would be best for Milla. We were fortunate to be referred to Professor Leo Donnan, an orthopaedic surgeon at the Royal Children’s Hospital in Melbourne. Professor Donnan helped us understand what we would do once she arrived. He also told us about Limbs 4 Life and mentioned that he could put us in contact with other families whose children had experienced similar conditions. He reassured us that we would be fine and that Milla will totally ‘blow us away’ when she arrived. He explained that she would adapt to just about everything in her own way.
From our research online we came across a couple of Facebook groups which gave us some insight to various treatments available. Hearing from other families helped us get through those uncertain times. Knowing there are children all over the world with a similar condition to Milla helped us learn more and realise that it was going to be okay. Other parents’ advice and experiences did help however our advice to other parents would be to take to take other people advice on board, but source information locally rather than overseas, particularly in relation to treatment. We found some TED clips on YouTube of Aimee Mullins. For some reason these clips helped us to be positive. What an inspiring woman. I knew then that our little girl would have a spirit just like Aimee.
We are aware that some parents don’t find out about limb deficiency until their child is born. I think the fact that we found out at 20 weeks gave us time to heal, prepare and process our thoughts before Milla arrived. Even though we did endure months of waiting and wondering, we could still assess all the various options and felt somewhat prepared.
Milla was born by caesarean. It was assumed that her leg would be too deformed for me to deliver naturally. We didn’t expect any movement in her knee but the moment she was born her knee was able to move. After looking at her leg we didn’t feel that is was as bad as what we had been advised. Milla also had a hip dysplasia so from four weeks old she had to wear a hip brace for 12 weeks. This was heart breaking but we did it knowing that her hips had to be in the best shape possible given her leg issues.
The months following involved many scans and appointments. Eventually it was confirmed that there was complete absence of the right tibia and no ankle so a knee disarticulation (through the knee amputation) was going to be the best form of treatment.
Milla had her surgery on 2 June 2014. I cannot describe the heartache we felt but at the same time we had no doubt that we had made the right decision for her quality of life. We had been told that children are resilient and she will astound us. She certainly did! In less than 48 hours she was home and crawling on her heavily bandaged ‘stumpy’. The entire healing process took about six weeks. We are so proud of her and the way she has overcome this and adapted.
Four months on and Milla is now slowly getting used to her new ‘leggy’ which she received about eight weeks post her surgery. This has been quite difficult and not as easy as we thought, but we are making progress. Milla has fierce determination and nothing is stopping her. She stands up on her left leg and finds her own way of getting around mostly crawling. She is so fast! Although it is taking time for her to adapt to her prosthesis, we remind ourselves that she is only 15 months old and she will get there in her own time and her own way. We just need to encourage and support her.
We still tend to get sad when we see her with other kids her age who are now walking. My heart still aches for her but we always remind ourselves that there are many other children out there who are much worse. She is a beautiful, happy and healthy girl who has already touched so many hearts. We are so blessed with so much love and support from our friends and family. We collect flamingos for her because it reminds us of her ‘special’ leg so her room is filled with many flamingo items.
We truly believe that Milla is going to be an inspiration to so many people, she is already is! We are doing and will continue to do everything possible to ensure that she leads a happy, healthy and successful life no matter what path she wants to follow. She continues to amaze and delight us and we have no doubt whatsoever that she is going to be one strong and determined girl with a positive attitude and approach to life.
For anyone reading this and going through a similar experience, we found that Facebook groups were our saviour rather than medical sites. You can reach out to others and ask questions and know you are getting feedback from people that are going through the same / similar journeys. We are thrilled to have been introduced to Limbs 4 Life. What a fantastic group to get involved in. We are looking forward to spending more time with this group and the families involved. We want to be there for others and support others through their journeys so we encourage anyone reading this to reach out to us, if you need to.
Our beautiful daughter by Shane and Brooke Gooch.