Parent Stories

Once I was able to attend The Royal Brompton, it was a shock.  We were not aware antenatally that Oliver was unwell.  The wires, the tubes, the machine noises, and the environment were all so surreal.  On entering PICU, I walked past a lady in the corridor who said “You’re here” with a caring smile. Little did I know then that she and her Joshua would be such a big part of my life and become my family.

In our bay opposite Oliver was a beautiful little boy, even under all the tubes and wires, his little chubby cheeks, Joshua.  I became very close to Sophie, very quickly.  We became our support – we laughed, we cried, and we sometimes got hysterical just trying to process our feelings.  One evening I was sitting next to Sophie, and we were chatting to little Joshie in his bed.  Sophie was taking pictures and Joshua suddenly smiled, his first smile, it was magical.  A smile that will never be forgotten, it lit up the room and could turn rock to gold.

I was also present at Joshua’s first cuddles, his first bath, his first outfit, his first time coming off his ventilator, his time having a bottle, and Sophie was there at Oliver’s firsts too.

It still makes me laugh when our boys found their little cries which sounded like little lambs, and when one would stop, the other started.  They definitely kept the nurses on their toes.  They were best friends forever from the very start.

I still remember the very first time Sophie let me give Joshie a cuddle, a memory I will treasure forever.
The boys always did things together – one would come off their ventilator and a few days later the other would too, one moved to the ward, a few days later so did the other, that went right through to rolling and sitting up.

Our very last time seeing baby Joshie was at a family event organised by The Brompton Fountain charity, where we visited Battersea Zoo. This is where one of my favourite photos of our boys was taken.

Joshua I still think of you every day and what you and Oliver would be getting up to.  You would be in big boy school now, and I can almost picture you standing next to your BFF.

Keep being Oliver’s butterfly, we know it’s you, you beautiful boy xxx

Never forgotten, always remembered, forever young, forever perfect, and always missed xxxx

A few minutes into the scan, I heard the words nobody wants to hear although it could have been worse. Still, it was awful. The technician said, “there’s something wrong with the baby’s heart.” I was shocked, sat up and we stopped the session.

The technician told us she wasn’t trained to diagnose what the issue was, but she recognised that the heart did not appear normal. Looking back, I am so grateful she was skilled enough to catch it and get a referral to a cardiologist. The rest of the scan was a blur. My husband and I spent the next few days googling “heart conditions in babies” to get a grasp on what this could mean. We feared spending the rest of our lives in hospital with our child.

A few days later, we met a lovely cardiologist who efficiently performed the scan on our baby’s heart. Once she finished, we were ushered into a conference room with a nurse specialist. They told us the diagnosis, hypoplastic left heart syndrome, which was a mouthful and took some time to say with ease. They explained that our baby’s heart did not develop correctly and had an underdeveloped left side. We were given several options. One was to continue with the pregnancy and after birth, the baby would undergo several surgeries to allow a chance at life. The other option was termination of the pregnancy. My husband and I looked at each other. There was no conversation needed. We told them we were committed to the pregnancy under no uncertain terms. Our baby didn’t have a voice. We were the only ones who could advocate for it, and we couldn’t give up.

Not ideal circumstances for your first pregnancy or any pregnancy. My husband and I kept our heads down trying to keep things “normal.” We took a pregnancy class but didn’t tell anyone what was really going on. We only told our parents and a few friends. We had no idea what we were in for and didn’t want to burden others with our situation. We also didn’t want to hear insensitive comments or opinions as we navigated through such an uncertain time.

We were told where our baby would be admitted: The Royal Brompton Hospital. We had an appointment with the surgeon in advance of the baby’s birth and were invited to a new parent’s session at the hospital.  When we met our surgeon, a seasoned professional Italian man, he calmly explained the surgeries and risks. At the end, my husband cracked a joke and he smiled that big infectious smile that we pretty much saw daily during our stay at the Brompton.

At the parent’s welcome session, well, you could cut the tension with a chainsaw. A bunch of parents sitting in a room, not looking at each other or talking because we were all caught up in our own misery. I tried to be strong, but unfortunately one of the staff came over to talk to us and said something unhelpful.  I was taken aback by her abrupt remark. She knew once she saw my reaction, it was the wrong thing to say. She immediately said “I shouldn’t have said that” but the cat was out of the bag. I couldn’t pull myself together. We left the room, found our nurse specialist and I told her it was all too overwhelming.  Once I was on maternity leave and had a bit of breathing room, I would be in a better place. She kindly offered to meet me at the hospital again to show me around and I took her up on it. I saw a lot of babies in the ward and spoke to a few parents. It helped me visualise what the situation would look like. I met an out-going mum whose daughter had the same condition and she talked me through her experience. Things seemed to be on track for her daughter which was so reassuring.

I met with one of my close girlfriends who happened to be in London. I told her what was happening, and she had a few things to say… “it’s 2016 and the medical professionals will fix it.” She mentioned a friend whose daughter has the same condition, is four and the only difference between her and other kids is the scar on her chest. She does ballet and there were some developmental delays, but she is doing great. Lastly, she said “God won’t give you anything you can’t handle.” On the last point, I was thinking, but this is MY CHILD! This is really pushing me to the max.

With that, I gave birth to a beautiful baby boy. His nickname has always been “Little Man.” He is this little independent man who just gets on with it. Once he was born, I got to hold him for a precious minute in which he looked right into my eyes. He was alert and it was wonderful to make that quick connection. Then he was off to prep for his transfer to the Brompton. My husband and I agreed that he should never be left alone so he followed our son, while I stayed behind.

It was hard to be separated and I remember the next morning, it was incredibly tough for my husband. His wife was recuperating in one hospital and his first-born child was in another hospital being prepped for heart surgery. No kind word could make my other half feel okay about what was happening.

My husband practically kidnapped me a day and half later so I could finally join my son. We went directly to the hospital where I could just sit near my little guy. He looked good and was resting. He was heading to surgery within hours. I met a few nurses and a member of the family liaison team.

Little Man was supposed to have his “First Big Operation” the Norwood, but that was scrapped as he didn’t weigh enough. They did the Pulmonary Artery Banding to buy time for him to get bigger which would hopefully lend to a more successful outcome. It was the first of many walks, with our baby in his cot, to say “goodbye” as he went off to surgery. It’s such a painful, worrying moment as your innocent baby has no idea what he or she is in for. You just want reassurance that the outcome will be favourable, but you must wait that painstaking wait.

The procedure was short and successful. I remember feeling overwhelmed the first few days and weeks. So many machines and alarms that I didn’t understand. Every time an alarm went off, I felt scared until someone noticed my distress and explained that the alarms were not a bad thing. A wide range was set to get ahead of any issue. Everyone kept asking if I was okay. I burst into tears in front of a nurse at one point because nothing was okay about my baby being in hospital having several heart surgeries. It happened to be that nurse’s first day. She felt really bad and told her boss “I made Little Man’s mum cry. “

I held my Little Man as much as I could to build that bond and get him out of his cot. Everyday sort of felt the same. There were small ups and downs and a few very bad days, but we got through it as a family. I think part of what is difficult is not understanding what can happen in this process and panicking over anything negative no matter how small. When you don’t have a medical background, it’s hard to comprehend something that is so complex, even though it has been explained to you a thousand times. When I look back now, I have a much better understanding of the bigger picture.  Most of the niggles along the way were in the scope of what could occur.

What is also frustrating is that nobody knows how YOU feel. All the professionals around you doing their job, do not have a child with a heart condition so there is that huge emotional disconnect and lack of understanding. Having a healthy child of your own does not give insight into what another parent is dealing with when their child is poorly. This was mainly evident in some of the “clumsy” remarks from time to time. I don’t bring this up to criticise because most of the staff were kind and amazing beyond belief. Any hurtful remarks were from a small handful of staff, and I see it as a training opportunity.  Many parents were on the receiving end of a few inappropriate comments surprisingly from staff who had a lot of experience. Years after being out of hospital, some parents still remember these comments word for word as they exacerbated their trauma. It’s so important for staff to be mindful and professional with their language and gossip. On balance, as parents, we don’t know the stress and decisions behind the scenes of the professionals supporting us. I did see an array of behaviour from parents, some not so great, but I get it. Every parent is trying to cope, and any unreasonable behaviour is stress and fear speaking.  I found the most comfort from other mums as we were all completely out of our comfort zone. Secondly, the family liaison team was always a safe place for support. It’s delicate balancing communication and stress between parents and the medical team.

Early in our stay, we met baby JOSHUA LYNAGH and I immediately struck up a friendship with his mum. Joshua was born on Christmas Day and was one month older than Little Man. Joshua and his family were always a few steps ahead, so it was great to get his mum’s advice. It helped me prepare and understand what might be ahead. Joshua was an adorable, chubby, happy baby. Great big smile and a commanding cry. When he cried, you heard it! There were many times when we were in the same room. I wasn’t sure Little Man would be able to sleep well. Our nurse later said, “your kid loves his sleep… he was the only one who was out all night!” It was great to share the room though as it lightened the mood having mums you connected with.

When we finally got close to Little Man’s biggest operation, the Norwood, I was terrified. For two days, I basically sat by his bedside, wrapped in a blanket as if in my own cave.  I did not want to talk to anyone. One of the other mum’s noticed and asked if I was okay. I said “no, he’s having the Norwood tomorrow.” She got it and tried to reassure me by stating that it would be fine. The surgery came and went and most of what needed to be done went well, but our surgeon was not entirely happy because there was a “leak” which he didn’t like. He said he was considering options. I was mortified. Two mornings later, our surgeon decided he needed to get Little Man back in surgery to fix the leak as best as possible. We trusted our surgeon but felt sick over the scenario to the point that we were too upset to do that painful walk to surgery with Little Man again. We left the building. It was all too much.

When the surgery was over, we saw a different reaction from our surgeon. He seemed much happier and said, “it was the right decision.” This was a great relief. Little Man made a brilliant recovery and looked so well as he transitioned out of intensive care. The long wait for his next surgery was on. After this, we could go home. I remember days going by, people looking at us like “you’re still here” and feeling like I hit a brick wall at four months. We were so close to leaving but not quite there yet.

Our surgeon oversaw all of Little Man’s surgeries and was in daily to check on him. I was impressed that he was so hands on. He had a strategy and always seemed to have a plan B, just in case. We were so fortunate that he had moved to this hospital before our arrival. Our son’s condition is one of his specialties. A few doctors had mentioned if their child needed surgery, they would choose him. We always felt like Little Man was in good hands.

During our stay, I really did underestimate how hard it would be.  There were things I witnessed that I was not prepared for… parent’s screaming or crying in pain, many cardiac alarms going off and the hardest of all, seeing a few parents leave the hospital without their child. When you are in that environment for some time, unfortunately, it’s inevitable. You are going to see things. One late afternoon, I went to the drinking fountain and took a sip. When I lifted my head up, a door opened from a room where a child had been for a few weeks. I had spoken with the mother who said the situation was a nightmare but of course everyone was hanging on to hope. The bed was wheeled out with massive layers of sheets over it. Behind it, followed the child’s father carrying his little girl’s pink bag. He and I looked at each other knowing exactly what was happening and then he looked down. I was so shocked and felt immensely sad for him and his wife. It’s a memory I can’t shake.

Little Man finally had his next big surgery and bounced back. He had an NG tube from birth and after seeing toddlers running around the hospital with the tube intact, I was beyond worried about how to transition him off. I kept being told “we had time” to get it sorted, but honestly, I felt so angry that it wasn’t sorted. He was most likely going to leave the hospital with the feeding tube. I desperately wanted him to drink milk out of a bottle and pull out that tube even though it was beneficial during those many months.  The thought of being alone at home trying to wean him from it was this big monkey on my back. As we got very close to discharge, it was a mix of emotions. I was an ecstatic bundle of nerves. We just wanted to go home and have the freedom to establish Little Man’s routine in peace. The hospital was all he knew.

Joshua was such a beautiful, beautiful, boy who the world will now not have the privilege of seeing grow into a man.  He was an incredible boy, with such strength and an inspiration to all.  He was my world, my heart, and my everything.  He did us all so proud and I was honoured to be his mummy.  I was so lucky to have him in my life, even for the short time he was with me.   He changed my life and my heart aches for him every day.  I miss him so incredibly much and still cannot believe he is no longer here.​​

Joshua has grown his wings and heaven has gained an angel. It has broken my heart to lose him, but he didn’t go alone, he took my heart with him, and we will reunite in time.  ​

​Now I aim to bring positive from his death, helping others and building his legacy.

This was the most challenging period of my entire life, but there are many silver linings to acknowledge:

• There is a diagnosis and strategy for your child’s condition which on its own is huge and important to remember. Without this, all is lost.
• The specialist hospitals… this is what they do! They do heart surgery on babies, children, and adults. It’s phenomenal! Every year, advancements are made, and success rates improve.
• It is possible to have normalcy if your child has a heart condition. It will take time and adjustments, but you have the power to create a “normal” that works for your family.

With those silver linings, know that it takes A LONG TIME to unwind yourself from the ordeal of “living” in hospital and the stress of what your child must go through. That amount of time needed to heal, no matter how long is okay! There is a lot to process and recover from. It’s not easy but you should do so in whatever way works for you. To date, I am still recovering. I’m much better but am naturally a worrier and a stress case so it’s a work in progress.

I remember speaking with a doctor a few years later about how parents could be more prepared. She said it’s impossible to prepare someone and most parents leave the hospital with some form of Post-Traumatic Stress Disorder (PTSD). She explained that even though she is a doctor, she suffered from it when her own children were in hospital for a short time with complications much less severe than anything related to the function of the heart. I agree with the doctor on the part about PTSD, but I disagree about it being impossible to prepare parents. I think so much more can be done. Candour, I mean brutally forthcoming dialogue, helpful information beyond the general details of the condition your baby has and mental health support during and after a hospital stay would be great. Parents need to be prepared for the good, the bad and the ugly.

I am one of those parents recovering from some form of PTSD, although I didn’t realise it at the time. The fact that PTSD was never brought up or discussed in any capacity before, during or after our stay in hospital is truly a blind spot in the wellbeing of parents. Any support felt very reactionary rather than pro-active. There is a huge opportunity to help parents even more. The stress of feeling like you are living on the edge of a cliff every single day, hour and second your loved one is in hospital is intense. Then, when you suddenly hear the magical word “discharge” and go home, you are still carrying that stress and way of living you coped with all those months. It took me a long time to understand how stressed I was. I felt happy and calm when Little Man was in my arms. When he was sleeping, there was a ton of panic about everything… managing his medication, being able to monitor any alarming changes, weaning him off the NG tube, catching him up on eating and drinking, what other delays might he have, would we have to go back to the hospital again and again, would our child have a “normal” life, would he have a good quality of life, what would Little Man’s life expectancy be? So many questions and thoughts running through your head, mixed with traumatic memories of what your child, other children, other children’s parents endured, parents who lost their baby… it was a lot!

Sadly, for baby JOSHUA and his family, it was very traumatic. There was an enormous amount of stress around his recovery, and we were so stunned and heartbroken when brave little JOSHUA passed away. It felt so cruel given all he and his family had been through. His mum was so strong throughout. Her grace and resiliency have been truly remarkable over the years. With all that grief, she still found time to check in on Little Man and his progress.

From the day we got the dreadful diagnosis, all we wanted as parents was “normalcy.” We felt so left out during the early days in hospital when we could not take our baby out to see the blue sky, cuddle with him in a café on the weekend or take him to the park in the buggy. I remember when we left the hospital, Little Man was 5 ½ months old. I was worried that he wasn’t going to be happy in his car seat on that first drive home. I sat in the back seat next to him, ready to provide comfort. He didn’t need it.  He ignored me the entire time. He was too busy watching the world go by. The world he missed out on but was keen to finally take in. The road to normality was slow but Little Man is just months away from his sixth birthday!!! He had his “final planned surgery” at 3 ½. He is in school thriving with his peers and is the happiest child! He has a good quality of life and as a family, we finally got our normalcy!

No matter how painful this all is, it was worth it, and I would do it again with no regrets because our son is alive! Yes, as a mum, I feel a bit battered from the experience, but as the saying goes “what doesn’t kill you, makes you stronger.” You pick yourself up and try to be your best self for your child who needs you more than anything.  I realise that not all endings are successful or happy but making the choice to give your child the best chance at life is a brave and loving choice. The entire team of medical professionals along the way, bent over backwards to save our son’s life and showed the same dedication to every child coming through those hospital doors. We will forever be grateful to all of them. We could not be prouder of our Little Man who loves his life and excitedly runs into his classroom with the biggest smile ready to take on the world.

My name is Stacey, and this is a story of an amazing heart warrior.

I enjoyed my pregnancy as much as I could I had more scans than a normal pregnancy and was due to be induced at 40 weeks.

At 37 weeks we went for our final scan, and we were told the worst news our baby was in heart failure. He had fluid around his heart, lungs and stomach and he was barely moving. We were told he had to be born today but that he wasn’t going to survive. Our hearts were broken, we had come so far, and we were going to lose him.  I was quickly wheeled into theatre and at 4.51pm our beautiful baby boy was born in better condition than the doctors could have imagined. He was breathing by himself for a good hour before he was put on a ventilator. He was perfect.

After 9 days in St. George’s hospital Max was transferred to The Royal Brompton hospital and the journey began. Max was very unwell and needed surgery, but we had a problem, doctors didn’t think that surgery was an option for him and suggested we put him into a hospice and withdraw his care. We sought second opinions from other hospitals and after a lot of fighting we finally met the most amazing surgeon. He told us that it was risky, and the survival rate was 10% but he believed that he could give Maximus a chance of life.

After 12 long hours of not knowing if our baby would be coming back to us, he came up from theatre and he looked beautiful. His surgeon had worked a miracle and had proved everyone wrong.

All In all, Max spent 7 months of his life in intensive care at The Royal Brompton hospital. It wasn’t easy he had countless surgeries from liver to tracheostomies and a horrifying weekend of cardiac arrests. After a long 7 months he was finally ready to be transferred to our local hospital and the transition to coming home began. He can home for the first ever time, for just the day, on Christmas Day.  It all happened so quickly that we had no Christmas tree or Christmas dinner. We didn’t care we had all we needed being at home – our baby, with no nurses, just us. He finally came home properly in January, and we were finally complete.

Seven years on we have the most amazing boy.  We were told so many times Maximus wouldn’t lead a normal life; he would always be tired, never eat by himself, never go to school. We have quite the opposite child, one who is up at 4am most days, eats like there is no tomorrow and loves going to school.

Being a heart mum is my superpower.  I never in a million years knew I had this much fight in me. It’s given me such a different perspective on life, and I appreciate things so much more. Is it hard at times? Yes, having to make life or death choices without knowing if it’s the right thing to do. Sitting for endless hours in A&E and being away from home for weeks, sometimes months, during a hospital admission. Seeing your child in pain and wanting to take it all away. But for my son I will do it time and time again. I am so proud to be his mum and without him I wouldn’t be who I am today.