I remember the day we found out Bertie’s heart needed fixing.
I had gone to a support group, Acacia, for the first time. I sat and cried about Bertie being so poorly. I was terrified of what was going to happen.
Just two months before we had nearly lost Bertie and her sister, Amelie, to Paraflu. Prior to that the girls had spent the first 11 weeks of their lives in hospital, after making a shock arrival at 29 weeks gestation in which we had all nearly died.
I had been diagnosed with Post Traumatic Stress Disorder. I was scared that I didn’t have the strength to deal with more trauma. But you just do don’t you?
As I cried I told the support worker that I couldn’t be ‘Hospital Mummy’ again. I’d done it for too long. Being Hospital Mummy means leaving your baby/babies on their own. It tears at your heart every time.
Unless you are very far from home it is unlikely you will have access to hospital accommodation, which has to be prioritised for those most in need. And as for many, I had family at home to care for too. David had to work and I found it very difficult to leave our babies with anyone else.
Based on medical advice, I couldn’t take Bertie’s sisters into hospital. I was keeping them away from public places and people in general to reduce their risk of viruses. As such, I knew the logistics would mean Bertie spending time on her own. I couldn’t bear it.
We had taken Bertie to the GP several times. She looked grey and would scream as soon as she saw her bottle. To try and feed her would be to torture her. She was hungry but couldn’t bear to drink and would scream. I didn’t know if it was her reflux or her heart. The GP prescribed reflux medication.
We had already been told that Bertie had a PDA, that was likely to need surgery when she was big enough, around age 1. We had been warned that if the operation was undertaken before then Bertie would need open heart surgery.
To try and feed her was really upsetting. It would take up to two hours of repeat trying so she could rest in between. I had a 3 year old and her baby sisters to care for too.
The situation felt impossible at times. We had a nickname for Bertie. We called her GG, which stood for Grumpy Gnome. She was just upset so much of the time. It was really sad, but also very difficult when you’re trying to take care of four children. In lots of those early pictures, Bertie can be seen crying.
We would try everything to get her to take her feed. We could be seen trotting round the Kitchen island as somehow we learnt that a little movement helped her.
Amelie also had reflux and would take a long time to feed. I found the situation extremely worrying and anxiety inducing. Bertie was failing to thrive and I was scared.
As we waited for her referral as a heart outpatient we started to raise our concerns with our health visitor, who was very supportive.
On the day that I went to Acacia for the first time, David waited in to see the health visitor. I came home to be told that Bertie needed to be taken to Birmingham Children’s Hospital straight away.
David took Bertie to Ward 11 in Birmingham Children’s Hospital whilst I stayed at home to look after her sisters and Felix.
Bertie didn’t come home for a month.
My baby girl had an enlarged heart, an enlarged liver and first degree chronic lung disease. All because her little heart was working too hard. She was immediately given a feeding tube so that she could rest.
Bertie was failing to put on weight because she was expending more calories than she was gaining in the effort it took her to drink her milk.
When it felt like we were torturing her in trying to feed her, we really were. It had been torturous for her to drink her milk because she couldn’t breathe properly as her heart was failing and the fluid was going into her lungs. This is why she’d scream as soon as she saw her bottle.
My poor, poor baby girl.
My heart broke. But now I knew she was safe. The consultant informed us that the operation couldn’t wait until she was older. Bertie now needed her heart fixed to save her life and she wouldn’t be going home until it was done.
Ticking Time Bomb
When we learnt how poorly Bertie was, it felt like we’d been living with a ticking time bomb in our house. How had this been allowed to happen? It transpired that on discharge from her initial 11 week stay, the hospital had failed to refer her as an outpatient to cardiology.
After having amazing life saving care from the NHS, we felt incredibly let down. I say this with a heavy heart because I have enormous gratitude to the NHS. This was simply a human error, but it could have cost my daughter her life.
David and I became a tag team. I would wait for David to come home from work before racing out of the door to see Bertie in hospital. Meanwhile, I arranged a cuddle rota for her with friends and family.
That didn’t stop me feeling hugely guilty as I arrived on the ward. I couldn’t help but think that people would think ‘here comes that awful mummy who doesn’t stay with her daughter’.
I remember the fear of parking in Birmingham city centre on my own and walking in darkness around streets I didn’t know to get to the hospital. As I was there until late I started asking security to escort me back to my car, particularly as a big group of men started congregating outside the hospital every night. But what could I do? The evening was the only time I knew I could definitely be there, but it didn’t feel safe. The whole experience felt terrifying.
For my daughter Bertie, please know that in the circumstances we had, we spent all the time we could with you. We did all we could to get you company as much as we could. I wish it could have been different. I’m so sorry.
One moment in that whole experience will always stay with me. For anyone who has spent a lot of time in hospitals, you will know that it is not only the sheer terror and anxiety relating to your own child’s health, but the collective sadness you experience just being in a hospital.
My tear stained face was one of many. We’d give knowing looks of comfort to each other and sometimes you’d share your stories in the family room and support each other.
But I am grateful that I did not experience the raw grief I witnessed as I stood talking on my phone at the hospital doors one Sunday.
I saw a mummy and a daddy exit the hospital holding a bag of belongings. They were being held up by family as they sobbed in overwhelming distress. I wanted to reach out to them and comfort them. To me it was clear they had just lost their child and it makes me cry even now remembering their pain. The grief was palpable. I could have reached out and touched it. I will never forget that one moment.
In life there will always be challenges. As a family we experienced a series of traumatic health challenges over an extended period of time. But we kept on surviving. And with every survival I learnt my strength. At times I felt torn down, but I had children to care for. I couldn’t fall down.
But when you witness the pain of a grief stricken family up close, when you feel the fear of nearly losing your own child more than once, when you feel the fear of losing your own life, as I did, you learn to be grateful. To look. To see. To feel. To be thankful. To appreciate.
For all of the fear, for all of the heartbreak, we brought our children home. We are fortunate.
I wish for my girls, the health traumas hadn’t happened, but they did. And they survived. And I appreciate every single day. I will never forget that it could have been so different.
I never stopped feeling guilty about not being able to be there enough with Bertie.
For multiple families the logistics of situations such as these can feel impossible. Particularly when you add into the mix the not wanting to expose your babies to germs. In hindsight, the anxiety from my PTSD also meant that I found it nearly impossible to leave my babies in the care of anyone else. One of the most trying elements of my daughters being in hospital was their care being in the hands of others. I wanted to be totally responsible for the decisions that were made about my babies and I wasn’t. This frustrated me and hurt my heart.
But there was a day that tore at me more than any.
David was late home from work and I raced out to arrive at the hospital around 8pm. I walked into the room Bertie was sharing with one other baby: she wasn’t there.
Bertie had been moved onto the open ward with several families. As I sat there frustrated by the noise and constant alarms, I became aware that the family opposite were coughing and spluttering. They were throwing their used tissues in the bin next to my Bertie.
I felt my anxiety rising. It wasn’t safe for her to stay there. I hadn’t been there to stop her being moved.
I felt furious and sympathetic to the family in equal measure. I understood they wanted to be with their baby, but they shouldn’t have been on the ward. They were exposing him to great risk and all of the babies around them. I heard them discussing their concerns with the nurse, that he had caught their cold and was coughing up his feed. Why weren’t they being moved into isolation to protect the other babies?
At this point in the series of traumas that had occurred, I wasn’t well. I was battling with PTSD. I felt frustrated with choices being made by medical staff that I didn’t consider to be right for my babies. For months I’d lived with my babies being in the care of others. I can’t even imagine this now. I felt vulnerable and wanted to avoid any confrontation.
Though I didn’t feel confident, I knew I had to get Bertie moved for her own safety. I worked up the courage to go the nurses desk and explained my concerns to them.
When I explained the risks due to Bertie’s prematurity, I was told that all of the babies on the heart ward are small. I felt amazed at the difference in the approach from a NICU ward. NICU had told me to stay away when I was ill. But on a ward of a different purpose, there seemed a lack of understanding relating to prematurity and the life threatening risks posed by a simple cold, particularly to a baby with a weak heart too.
My baby wasn’t just small. She was born too soon. As a result she has suppressed immunity. There’s a difference. That said, none of the babies should have been exposed to that risk. The family shouldn’t have been in shared spaces on the ward. It said this clearly in the guidance provided to parents, that if poorly it’s important to stay away, but the situation wasn’t being managed in accordance with the medical guidance.
I broke down and explained that I had nearly lost two of my babies just weeks before, resulting in Amelie being in intensive care in a medically induced coma after she had stopped breathing in my arms. Bertie could not stay exposed to that risk.
They moved her shortly after. As I waited to make sure she was moved, I was late getting to my car and got a parking ticket. I had never had a parking ticket before. That was the straw that broke the camels back and I bawled all the way home.
I’m sure the cry did me good.
As I feared, Bertie did catch the cold. For her this meant bronchiolitis: a life threatening illness for premature babies as we had found out only weeks before.
Bertie was put into an isolation room to protect others. She spent a week longer in hospital as a result. Once again, she survived.
We had been told that Bertie would not go home until her heart was fixed. We’d had a couple of slots given, only to be cancelled at the last minute.
Meanwhile, I was just content that I knew she was in the safest place until the operation happened. On the day Bertie went down to theatre we were relieved and scared that it was finally happening.
We had been given a choice as to whether Bertie had open heart or key hole surgery. We were amazed and relieved that there was the option of key hole. If it works, key hole is far less intrusive and the recovery rate is quicker. We wanted to give it a chance.
The surgery went on longer than anticipated. We became more scared.
And then Bertie returned.
Our relief was immediate. She was visibly pinker. She downed a bottle in one. She could breathe easily. The impact of the surgery was clear.
It had worked.
After a month in hospital, Bertie came home. Of her five months, she had spent four in hospital. We just felt relieved that things were going to be easier for her.
As for us, Bertie now fed much more easily. She started to thrive. She smiled more. I felt so much more content knowing that she was safe.
Life just became easier.
And Bertie’s eyes lit up.
I look back on the various health traumas that have occurred and I can barely believe what has happened. I’m proud of how we’ve come through.
Following her heart surgery Bertie’s health continues to improve. She’s still a ‘perfect little dot’, as the nurses used to call her. At the time of writing, she’s 17 months old (14 months corrected) and is just fitting 9-12 month clothes comfortably. Though her 6-9 month jeans are hanging off her today!
But she loves her food: this makes me so happy.
She’s happy to have cuddles with anybody and is always the first to greet guests. We think this is because she spent longer in hospital and is more used to strangers.
She’s cheeky. She smiles at me if I say no – I try not to laugh, and I think she’s going to be the boss.
I was scared that not being with her as much as I wanted to be for those four months, would effect us: make our bonding more challenging. Leaving your baby in hospital will remain as the most unnatural, challenging experience of my life.
For self preservation I would draw up an invisible shield around myself every time I walked off the ward to protect my sanity. I would never have gone home otherwise.
But now I just need to see her face light up when I walk into a room, watch how I barely have chance to sit down before she’s climbing on to me demanding cuddles, to know that we’re good.
We’re more than good. I adore her. Her cheekiness makes me laugh. Her friendliness makes me joyous. Her bravery makes me proud. My Maya-Albertine is the definition of girl power.
Bertie, you little superhero, you. I love and adore you.