Pregnancy is often one of the most exciting times in a family’s life. For me, however, my pregnancy with my son Oscar turned out to be a rollercoaster ride of challenges, medical hurdles, and heartbreak. The journey, which started with hopes for a healthy baby, quickly became an uphill battle for survival—both for Oscar and for me. But amid all the fear and uncertainty, one thing remained constant: the unwavering support of Ronald McDonald House Charities UK. Their kindness and care provided me with a safe space to breathe, find support, and stay close to Oscar when I needed it the most.
A Difficult Start: The Unexpected Diagnosis
My pregnancy was considered high-risk due to my thyroid issues and polycystic ovary syndrome (PCOS), but the doctors didn’t express any major concerns. Everything seemed fine, and Oscar was growing normally in the womb. At 16 weeks, I went for a routine gender scan, and we found out that we were expecting a baby boy! But during the scan, the sonographer raised an eyebrow and noticed that Oscar’s stomach was positioned higher than normal. She advised us to visit a specialist hospital for a closer examination.
The following day, we received a call from Worthing General Hospital. The doctors told us that they suspected our baby had a condition called congenital diaphragmatic hernia (CDH). The condition, which occurs when a hole in the diaphragm allows abdominal organs to push into the chest cavity, can cause severe complications, including underdeveloped lungs. We were told not to worry, but when my partner, Dan, Googled it, the results were terrifying. The prognosis wasn’t good.
The Journey of Hope and Heartbreak
We were transferred to a specialist hospital in London, where the diagnosis was confirmed. The doctors told us that CDH was treatable, but the risks were extremely high. The condition could be fatal, and there was a significant chance that Oscar wouldn’t survive. I felt lost, helpless, and afraid. We didn’t want to tell anyone yet because we were still hoping for the best, but it was hard to ignore the grim reality of the situation.
At 24 weeks, I was hit with another shock. I had a seizure while driving, resulting in a terrifying car accident. Fortunately, I wasn’t going fast, and my daughter Reece was unharmed. I ended up in the hospital, where doctors found that the stress of my condition had caused some seizures. They had to put me on medication and prevent me from driving, making it harder to get the care I needed for my pregnancy.
Despite these challenges, I continued to carry Oscar as best as I could, but things started escalating. At 26 weeks, after a routine scan, the doctors told us that Oscar’s situation was critical. The birth was induced in an emergency C-section, and Oscar was born weighing just 680g. The moment he arrived, we knew that we were facing a long and difficult battle. Oscar’s airway was obstructed due to his jaw being smaller than normal, and he had to be placed on a ventilator and transferred to a neonatal intensive care unit (NICU).
The medical team explained that Oscar’s chances of survival were slim, and we were told to prepare for the worst. Yet, in that moment, I couldn’t let go of hope. I had to believe that we could get through this.
The Lifeline of Ronald McDonald House Charities UK
As we faced the uncertainty of Oscar’s future, we were told about Ronald McDonald House Charities UK and the support they offer to families in need. At first, I wasn’t sure if we’d be able to get a room at the Ronald McDonald House Birmingham, especially given the constant stress we were under. But when we arrived, I was overwhelmed with relief and gratitude. The house was just across the street from the hospital, and it meant I could be close to Oscar at all times.
Walking into the Ronald McDonald House was like stepping into a safe haven. The staff greeted us warmly, and they made sure we had everything we needed. It was so comforting to know that, despite the whirlwind of emotions, we had a place to rest, recharge, and care for ourselves. The House allowed me to focus on being with Oscar and supported me in ways I could never have expected. I could rest when needed, shower, and eat—small comforts that made a world of difference.
The proximity to the hospital was a huge relief. Instead of spending hours traveling back and forth, I was able to stay right by Oscar’s side, monitoring his progress and staying involved in his care. The warmth and kindness of the staff at the House made a huge difference. I was able to connect with other parents who were also going through their own battles. These friendships became an unexpected source of strength, as we shared our worries, hopes, and fears.
Struggles, Setbacks, and Miracles
Oscar’s condition was precarious. Within days of his birth, he began to show signs of distress. He was diagnosed with a cleft palate and Pierre Robin Syndrome, a condition where a small jaw causes breathing difficulties due to the tongue’s positioning. Oscar’s airway was compromised, and he was put on a nasopharyngeal airway to help him breathe. He was also given feeding tubes because he couldn’t feed orally. The doctors performed multiple sleep studies and tests to ensure his oxygen levels were safe.
When Oscar was seven days old, he was transferred to the neonatal surgical ward at Birmingham Children’s Hospital. We were left with no choice but to continue waiting for good news, but at that point, Oscar was still fighting. There were days when we celebrated small victories, such as him coming off the ventilator. But then, there were setbacks—Oscar contracted respiratory syncytial virus (RSV) and went through periods of major instability.
One of the hardest moments was when Oscar’s condition took another major turn for the worse. He developed a lung haemorrhage and was on the brink of needing end-of-life care. I couldn’t imagine the loss of my son, and we were told to prepare for the worst. Yet, through all the heartache and uncertainty, Oscar fought back—he wasn’t ready to give up. Against all odds, he stabilized, and after months of setbacks, he was finally transferred to King’s College Hospital for lifesaving surgery.
A New Hope: Progress and the Gift of Ronald McDonald House Charities UK
As I moved from one hospital to another, the Ronald McDonald House Charities UK remained by our side. When Oscar was transferred to King’s College Hospital, I was offered a room atRonald McDonald House Camberwell, just minutes away from the hospital. Having a place to stay so close to Oscar was invaluable. It meant I could be there for every procedure, every surgery, every milestone, without the constant stress of commuting.
During Oscar’s recovery, he had numerous surgeries, including a stoma reversal and a procedure to help with feeding difficulties. It was a long and difficult road, but slowly, he began to improve. The medical team continued to work tirelessly to help Oscar gain strength.
Finally, after months in the hospital, we received the news we had been waiting for—Oscar could finally come home. After 135 days in the hospital, I was able to bring my son home, and we were able to begin life together as a family. It was a day I’ll never forget—one of triumph, love, and overwhelming gratitude.
Giving Back to Ronald McDonald House Charities UK
Throughout this challenging journey, I learned that hope can be found in the most unexpected places. Ronald McDonald House Charities UK gave us the gift of proximity, comfort, and support when we needed it most. The people we met at the House became like family to us, and the kindness and care they showed us will never be forgotten.
To show my gratitude, I have worked to raise awareness for Ronald McDonald House Charities UK. I’ve organized fundraisers, shared our story, and encouraged others to donate to the cause. Oscar’s journey is a testament to the power of love, hope, and community, and we will continue to support the charity that supported us through the most difficult time of our lives.
A Final Message of Hope
To any family going through a similar journey, my message is simple: Never give up. Even when the road seems impossible, there is always hope. Oscar’s survival and growth are a testament to the resilience of the human spirit. With the love of family, the support of wonderful organizations like Ronald McDonald House Charities UK, and a community of people who care, you can make it through even the darkest days.
Thank you, Ronald McDonald House Charities UK, for everything. Our family will always be grateful for the safe haven you provided, and we will continue to share our story to ensure that others can receive the same comfort, love, and hope that we did. Together, we can make a difference for families in need, one step at a time.
Noel’s Journey: A Story of Love, Loss, and Legacy.575
On May 17, 2010, my life was forever changed. My beautiful baby boy, Noel John Milton, was born a week earlier than expected. His arrival was the culmination of a completely uneventful pregnancy—one where we never thought for a moment that there might be anything wrong. Noel was the most beautiful baby, with a perfect head of shiny, dark brown hair. We named him after my late grandfather, and the joy he brought to our lives in that first week was beyond anything we could have imagined.
The Early Signs: A Heart Murmur Detected
Although Noel appeared to be perfectly healthy, during his neonatal check, the doctors picked up on something unexpected—a heart murmur. They reassured us that it wasn’t uncommon for babies to have heart murmurs and that it would likely resolve on its own after a night’s stay in the hospital. However, when the murmur persisted, we were discharged and referred to a cardiologist for follow-up care. Even though I was concerned, I tried to stay positive, trusting that we were in good hands.
Those early weeks with Noel were nothing short of magical. He breastfed perfectly, never lost an ounce of weight, and thrived, cruising along the 91st percentile for growth. It was clear that he was a strong, healthy baby. He brought so much joy to our family, and we made countless happy memories in those first eight weeks. Every smile, every giggle, every moment of pure bliss made me feel like the luckiest mother in the world.
A Mother’s Instinct: The Day Everything Changed
The morning of July 12, 2010, started like any other. It was a glorious sunny Monday, and Daddy had just kissed us both goodbye as he left for work. Noel was sleeping soundly beside me, just as he always did. I had planned to go for a walk with my dad later in the day. Everything seemed fine, but as I went about our usual morning routine, I began to feel something wasn’t right. Noel seemed more distressed than usual. His cry, which was usually strong and hungry, was weaker. Even breastfeeding didn’t seem to comfort him.
As I tried to change him, he became floppy, his breathing weakened, and my heart began to race. My mother’s instinct kicked in, and I knew something was terribly wrong. Noel was rushed to the hospital, but despite the incredible efforts of the paediatric staff, my beautiful boy could not be saved. He passed away that morning in my arms, far too soon, far too quickly. My world came crashing down, and I was left to grapple with the pain of losing him.
The Pain of Unanswered Questions
The weeks that followed Noel’s death were a blur of grief, heartache, and disbelief. We were left with so many unanswered questions. How could this have happened to my perfectly healthy baby boy? Why hadn’t his heart defect been detected earlier? While we will never know how things might have turned out differently had Noel’s heart condition been diagnosed during pregnancy or had he seen a cardiologist sooner, we do know one thing: we were determined to make sure that no other family would have to go through the unimaginable pain we had suffered. Noel’s death wasn’t just a tragedy—it became the driving force behind our mission to raise awareness and make a difference in his memory.
Turning Pain Into Purpose
In 2016, my friend Callie and I decided to take action. We knew that raising awareness about congenital heart defects could save lives, so we began organizing events to raise funds for Tiny Tickers and other charities that focused on heart conditions in babies. We were determined to make an impact, to ensure that no family would have to face the same heartbreak we had. Through our efforts, we were able to raise over £24,000—money that went towards vital research, education, and support for families like ours.
The events we organized, including the Make The Point 10k, were a way to honor Noel’s memory while also helping to prevent future tragedies. Each step we took, each dollar raised, was a testament to his short but meaningful life. Though we could never bring him back, we knew that through our work, we could help others, and that gave us a sense of purpose during the darkest of times.
Finding Hope in the Midst of Grief
In the years since Noel’s passing, I’ve learned that grief doesn’t have an endpoint—it’s something you carry with you, but you also learn to live with. The pain of losing my son is still there, and there are days when it feels unbearable. But through the support of my family, my friends, and the Tiny Tickers community, I’ve been able to find some measure of peace. I am proud of the work we’ve done to raise awareness of congenital heart defects, and I know that Noel’s memory continues to inspire others.
Noel’s story may have been short, but it was filled with love, joy, and meaning. He was the light of my life, and even though he is no longer here with me physically, he will always be a part of me. His legacy lives on through the work we continue to do in his name. Every time we raise funds, every time we share his story, we are honoring him and the impact his life had on ours.
A Legacy of Love and Advocacy
As I reflect on Noel’s story, I am filled with a profound sense of gratitude for the time we had with him. While his life was cut short, he changed mine forever. His story is one of love, loss, and the unbreakable bond between a mother and her child. And through our continued advocacy, I hope to ensure that his legacy lives on, helping to save lives and provide hope to other families who may find themselves in the same heartbreaking position.
To anyone who has experienced the loss of a child, or is currently navigating the challenges of a congenital heart defect diagnosis, I want to say: You are not alone. There is strength in community, and through support and advocacy, we can make a real difference in the lives of others. In memory of Noel, we continue to raise awareness, to fight for change, and to honor the precious life he lived.
Noel will always be my little angel, and I will never stop fighting for the families who need help, support, and hope. His spirit lives on in everything we do.