The honour of being Oscar's Mommy.

Me and Daniel saw a little heartbeat at a 6 week scan and we knew how strong his little heart was, but we never knew the expansion that his love would show to the world. The 12 (well 13) week scan was beautiful, I saw his heart beating away and I remember my joy as I saw his little feet, then I noticed the look of concern on the Sonographer's face. The Down Syndrome test had shown Oscar to have a larger than usual Nuchal Translucency. We were then given a 1 in 5 chance of Down Syndrome or a chromosomal abnormality.

We were then given a follow up scan at 14 weeks in the Fetal Medical department at Birmingham Women's Hospital, where it was discovered that our baby had a Congenital Diaphragmatic Hernia (a hole in the diaphragm which allows the organs to move into the chest area, hindering lung growth and causing other possible problems). How was it there was a severe condition that affects 1 in 2500 babies, yet we had never even heard of it. I had a CVS to test for an additional chromosomal abnormality. Due to the diagnosis of a Congenital Diaphragmatic Hernia (CDH), there were concerns regarding Edwards Syndrome. The CVS has a risk of miscarriage and Edward Syndrome is a sad condition which often babies do not survive, this in itself was heartbreaking, the thought that our baby may not even survive inside my tummy.

I remember waiting for the results, which felt like forever. Finally we received the phone call to say our baby did not have any of the more common chromosomal abnormalities and we were having a baby boy! The relief was unimaginable, as we were told if our baby had an existing chromosomal abnormality, the chances of survival are very slim. Me and Dan instantly knew our baby boy was to be called Oscar -as it was the only boy name we had previously agreed on.

Sadly, the joy seemed short lived as a week later the Geneticist told us that Oscar had a small deletion in his chromosome (this was found as I agreed to the EACH study, a new medical research study which allowed chromosomes to be looked at in closer detail). The deletion is very rare and there are only 10-15 cases of this deletion in medical records. The one factor which was common throughout all of the cases was each baby had CDH. Some of the babies also had a hole in the heart, cleft lip/ palate, undescended testicles and slight learning difficulties. This was scary to hear as all we wanted was for Oscar to lead as happy and "normal" a life as possible.

We continued to have regular scans after this, seeing Oscar grow. We were so proud and filled with hope to see his heart beating strong, even though it had been pushed to the right side of his body due to his organs being in his chest. We were even more delighted to find Oscar did not appear to have any additional problem, other than CDH, even those which were seen in the cases of the chromosome deletion.

No matter what the doctors said, Oscar continued to stay happy and snug in my tummy. The concern of too much amniotic fluid, preterm labour, all went out the window as Oscar was determined to meet us. He gave me strength from inside to keep going, as I thoroughly enjoyed every beautiful moment of pregnancy. I really did get to experience the true beauty of pregnancy with Oscar, the feeling that a miracle was inside my tummy, this little strong boy who so many already loved, he had not even met anyone yet and his strength shone through.

We decided to have a Baby Shower and raise money for CDH UK. Not many parents can say their baby raised more than £500 for charity before their bundle of joy had even made an appearance. Oscar really is someone special.

One of the rare sad pregnancy days was being told that "Oscar is unlikely to survive or make it out of the delivery room". Yet he showed the world he had other plans when he popped out on Tuesday 16th September (a day before his due day) at 9:02am. During labour the midwives and doctors on the Delivery Suite at Birmingham Women's Hospital were amazing! 27 hours of labour later and we were greeted by this beautiful little boy. All of previous fears and worries washed away as we saw our beautiful baby boy, our Son! That moment was magical. We both felt a happiness which is indescribable.

We were told to expect a pretty much lifeless body, but he was wiggling around, then as he was picked up to be taken over to the awaiting Neonatal Team, we heard his little cry. Imagine hearing a voice of someone you never expected to, that in itself brought us both to tears. He was breathing, he was kicking, his bright blue eyes blinking away. He made it!

He left the delivery room with the incredible team at Birmingham Women's Hospital and his Daddy. He hadn't just given us a beautiful 9 months of pregnancy, a beautiful 27 hours of labour (maybe not so beautiful at one point), a beautiful start to his life and our lives as a family. 

The following morning we received a 5am phone call to say Oscar was deteriorating. We made our way to the Neonatal Department, prepared for goodbye. We had a discussion with the consultant explaining the situation yet when we walked over to him, he started to improve. They said he obviously just missed his Mommy and Daddy and wanted us by his side. Not that I was complaining, as if it was up to me I would never have gone to sleep, as I could have happily watched Oscar all day and night.

The next day the decision was made to let him pass with dignity, as he had fought on despite his practically non-existent lungs. He had been on 100% oxygen and was fully ventilated, sedated and was receiving constant dozes of different drugs and medication to keep him stablised, yet his lungs did not physically have the ability to retain the oxygen.

Babies with CDH often have one small lung and a "better" lung, yet Oscar did not really have this as his left lung was practically non-existent due to organs stopping growth and the right lung, the "better" was also practically non-existent due to his heart migrating to the right side of his chest. A big problem was that one of Oscar's lungs had seemed to have punctured due to the pressure. The Neonatal team tried everything they could to improve Oscar's condition yet there was nothing that could be done. Oscar had had chest drains to try to remove the air which had seeped from his lung into his chest area, yet there was too much air in his stomach, he already had 2 chest drains in, which were removing unwanted air from his stomach and it was technically impossible to put a third chest drain in. He never gave up fighting and for that we will be forever grateful.

He had shown everyone that he was the strongest little man going. He had taught people to appreciate what they have in life, and even more amazing, he had changed me and Dan, he had given us the gift of parenthood. He fought on for 2 days with the help of the incredible staff within the Neonatal team. 2 days we never imagined we would get to spend with him. Seeing him all warm and toasty in the incubator was surprisingly beautiful.

We didn't ever want him to suffer, as he had never caused suffering for anybody else, only happiness, he was pure and innocent, he was beautiful in every way possible. He was and is perfect! Close family arrived to come see him, we could feel the love in the room. I had never seen his face look so warm, he looked even more beautiful (especially as his cheeks seemed to get chubbier every hour).

After our guests had left, we got to spend time as a family; Dan, Oscar and I. Birmingham Women's Hospital had already given us so much more than we imagined, and still they provided us with more time and comfort in times which would have otherwise been unbearable. From the second I was admitted into hospital, they gave constant care to us as a family, and allowed us to enjoy every moment.

We held him in our arms for the first time and we were finally able to feel his warm body against ours. The hospital allowed Oscar to keep his dignity and his passing was just as beautiful as the previous days. We knew he had done all he needed to and brought a love to the world that will never fade, and will only grow stronger every day.

Me and Dan have experienced things with our son Oscar, that most others will never understand the beauty of. We realised Oscar will be with us every second of his and our life. So although at times our hearts feel broken, we know that we are the luckiest people alive! Oscar Nicholas Summerfield is the strongest hearted person we will ever know and we have the pleasure to call him our son, others cannot begin to imagine the pride that gives us. The bittersweet reality is we won't hear him reply when we speak but we know he is there, we won't hear those words "I love you Mommy and Daddy" but we know he loves us more than anything (it is just my fight to make him love me more than Daddy as he is a Mommy's Boy, not that Daddy would agree).

We can't hold him in our arms but we hold him in our hearts and that is the closest, most precious cuddle of all. I could not be happier, as there is no joy that can beat creating a family, no words that can describe the emotions I feel to be blessed by having the most beautiful boy in the world and for him to be my son. Oscar is not gone, he is just peacefully sleeping, he will always live on. There will never be a day when we are apart.

In his memory, for the strength he has shown, for the love he brought to the world and for his ability to open people's eyes to realise what is important in life (something that not even adults often succeed to do), we are asking for donations, which will go to Birmingham Women's Hospital so that they can continue to help families and more importantly beautiful babies in their start to life, which as shown to us, can sometimes be a struggle.

We do not have a target amount, as however little or much we raise, we will be thankful to every person who has donated, or to those who have just read my story, or shared your kind words with us throughout our journey. We just really do appreciate all the love and support we have been shown as a family and we hope Oscar's life will always be remembered as a brief but beautiful one.

The Neonatal team at Birmingham Women's Hospital need vital equipment to ensure they can continue to look after the sickest of babies. Here is just an insight into how much the equipment a baby like Oscar needs and the cost of this equipment:
Incubators- help to ensure that the temperature and humidity is kept constant for the baby (Individual Cost £20,000)
Ventilators- these machines breathe for a baby and are needed when their lungs are too weak or under-developed to breathe on their own (Individual Cost £25,000)
Apnoea Monitors- these Monitors are able to monitor and record a baby’s breathing pattern (Individual Cost £960)
Scales- precision scales to weigh sick and premature babies quickly, accurately and safely (Cost £400).