I mentioned in a previous post that Danny had recently turned nine. His birthday was on April 18th but I’m only now finding the time to write about his birthday. Hopefully I’ll blog about his Reptile Party soon.
Edit: The intention of this post was to write about Danny’s birthday, starting with a brief description of his birth, however, as births can be complicated, especially the births of heart children…the post has turned into Danny’s birth story…
I know that all parents say this, but I really can’t believe that my child has turned nine! To me, he is still my very precious, special baby, even though I see this big, handsome boy before my eyes.
I can remember being nine years old myself and have such clear memories of being in Year 2 (now Year 4) of Juniors, it’s strange to think that Danny is already at this stage of his life.
It feels like moments ago that I pestered Dave to have this photo taken with me. Mummy and Daddy to be.
I didn’t have to do so much persuading with the Nanny and Aunty’s to be!
Wow, life “pre-Dan”. He is there! In my belly!
Once, your baby arrive it feels as if they’ve been here forever, and suddenly you can’t imagine how you lived life without them.
Thank goodness, my Mum or sisters managed to get this picture of newborn Danny for us. My one regret is not getting a photo of newborn baby Danny with me or Dave.
He was born by emergency C-section at 4.47 pm on Friday 18th April. It was “Good Friday” in many respects!
He weighed 7 lb 11 oz.
While the photo above was taken, I was still in recovery on my own (well without my family around me!), Dave was on the phone to (what felt like!) all of Milford telling them our happy news! A very proud Dad!
I felt so tearful and alone, I had loved Dave putting my precious baby next to me for cuddles and it was heart breaking when they both went away. From a high…down to so low. Nowadays Dad/Birth Partner and baby get to stay with you in recovery.
When I came out of recovery, Dave was still on the phone. Mum, now a proud Nanny, told me how my baby hadn’t stopped “talking” from the moment he was born…if only we’d known what he was trying to tell us.
He was gorgeous. I couldn’t stop looking at him, cuddling him, smelling him, talking to him, singing to him. I had skin to skin contact and tried to feed him with help from the midwives, he would latch on, feed for a few sucks then tire and sleep. We thought at first he was tired from the birth.
Eventually, all my visitors had to leave. Dave went off to “wet the babies head”, and Mum and Aunties to celebrate and make plans too.
I was alone with my baby. I was in a ward on my own, and couldn’t yet feel my legs etc after the c-section, so I had to ring the buzzer for them to pass my baby to me or to put him into the cot etc. They were happy with his feeding initially as he was latching on for twenty minutes at a time, but I felt he wasn’t feeding fully.
During this time, I sang to him, “Your Song”, “Eternal Flame”, “Hush Little Baby” and “Rock a Bye Baby”. I spoke to him in a quiet voice, telling him all about his family and how loved he was etc.. I felt so sad and lonely that Dave couldn’t be there with me though.
Then, my baby was unsettled, I felt like he was still hungry but couldn’t feed. The midwives again assisted me to feed him. He still kept crying and grunting. They said I needed to rest and they would settle him for me.
He was gone ages, so I rang the buzzer. A midwife came to me, my baby was fine, she said, but he was struggling to feed and breathe, which is common in newborns, so they were going to put him in the Special Care Baby Unit (SCBU) to help him breathe and feed for a while.
While this happened, and I was alone, my heart aching for my baby (I had only met him a few hours ago, but from now on it would always feel strange to be away from him) another baby was born (now a school friend of Danny’s). It felt strange to be there without my baby, while this new Mum and Dad cuddled their baby.
The midwives told me to rest as I would need my sleep in the morning, but I couldn’t.
In the morning, I congratulated the new mum. I was now so worried about my baby. Why wasn’t he with me? I couldn’t wait for Dave or my family to arrive. The Sister kept asking me when he was coming, I said sometime this morning.
I was told, I could go see our baby once Dad arrived, so now I was desperate for Dave to arrive. I asked them to ring him for me and they said they had been trying all morning.
I expected him to arrive, and ask how I was and I would explain calmly about how our baby was OK but had to go to SCBU. But NO.
Dave rushed in the ward, SHOUTING, “What the hell’s happening?!” I’d been missing my baby but had convinced myself he was OK and that I should keep calm. Now I was worried.
The hospital had not been able to get hold of Dave (he was out buying baby gifts, balloons etc), so they had rung my Mum. They told her they had to get hold of Dad ASAP. Something was seriously wrong, but they could not tell her if it was me or the baby, so my poor family all had to rush to the hospital not knowing what was wrong, how serious it was and who was ill, myself, the baby or both?
Next thing, I’m being lifted out of my bed into a wheelchair, still in my bloodied nightgown and surgical stockings. But, at last I am going to see my baby.
As it happened, SCBU was being rebuilt when our baby was there, so it was temporarily in a very small, dark room (almost like a large cupboard). In contrast to the dark room, in a well lit and heated cot, there was our baby. Our innocent, natural baby, now full of wires, keeping him alive. Breathing for him and nourishing him. We couldn’t cuddle him. All we could do was stare at him, hold his hand, talk to him and ask why?
The nurse took a polaroid of him for us to keep.
Then the doctors and Sister came in. They cleared their throats. They explained that they didn’t know what was wrong with our baby. They said it could be liquid on the lung or a hole in the heart, but our baby would have to go to Cardiff for more tests. Sister advised us that it was extremely important we gave him a name straight away.
I wanted him to be named in some way after my own late Dad, David (also making him named after his own Dad and Great Grampy) and Dave was a huge fan of the Wildhearts bass player, Danny McCormack, So that was him named: Daniel (Danny) David Evans-Critten.
The team from Cardiff came down within hours to pick Danny up. As he needed so much life saving equipment and the transport team with him, no family could travel in the ambulance with him. We had to say goodbye yet again to my baby.
One of the nurses was pregnant and I just remember thinking I hoped nothing like this happened to her baby when he or she was born. I hoped nobody else would have to go through what we were going through.
My sister kindly offered to drive us to Cardiff. The ambulance driver gave us directions to the hospital which was a two and a half hour journey away and advised us not to follow the ambulance, so we wouldn’t get upset if the emergency lights were turned on etc.
Less than twenty four hours post c-section, I had to discharge myself from hospital to be with my baby. I was in so much pain, as obviously Danny needed all the attention, so I didn’t get the topped up pain relief I would get with future c-sections.
Mum recalls now, that I was white as could be. From the worry, the pain or maybe a mixture of both.
When we were nearing Cardiff, the pain got excruciatingly worse. Sitting hunched in a car for two hours had not helped me at all. I couldn’t wait to get to the hospital to see baby Danny again, but I also needed to get out of the car for a bit and use the services.
We laugh now in hindsight, at the sight people at Cardiff Service Station saw that day. A hunched over, white, tear stained little me hobbling to the toilets…still in my bloodied nightie and surgical stockings! Because all thoughts were on my poorly baby, these things did not matter at the time.
We eventually arrived at Cardiff University of Wales Hospital. Jo parked up, Dave jumped out of the car, ran around the hospital grounds and before he had the chance to ask the first nurse where our baby was she asked, “Are you Danny’s dad?” He quickly went to see Danny, checked he had arrived safely and found a wheel chair to take me in to see him.
They were very good to us in Cardiff. They said Dave could stay on the floor of my side room, finally we would be together. We were in the room waiting to be able to see Danny. I kept hearing that wonderful sound that only a newborn baby makes. It choked me and I wished so much I could now hear my own baby’s cry.
My Mum and Sisters had bought me a basket of toiletries and treats, including a book to read. A Midwife spotted the book and started making light hearted chat about the author, Sophie Kinsella. I was polite to her but inside was thinking, how can life and “chit chat” go on when my baby might be dying? I never did read that book. I still have it, “Can you keep a secret?” but can’t bear to read it as it brings to me back to those hospital days and being hand milked by the rough nurses, ouch!
SCBU rang up to say they were ready for us to see Danny.
Here he is with me in Cardiff.
They allowed us to see him for a few moments. It was agonising seeing him with all the tubes etc and just not knowing, WHY?
We were about to find out.
A team of three Practitioners, a Cardiologist, Surgeon and a nurse led us into the “Quiet Room”. The room had a couple of comfy chairs surrounding a round table. In the middle of the table was a box of tissues.
The mood was solemn. The room so quiet. Dave and I waited anxiously. The first Doctor cleared his throat and broke the news to us. I don’t remember the exact first words he said, but it was along the lines of, “Your baby has a very serious heart condition and without surgery he will die.”
They then explained that Danny had a complex heart condition called Hypoplastic Left Heart Syndrome (HLHS). They explained in detail what his heart consisted of and why, now he was out of the womb, he could not breathe for himself.
They put some out of date British Heart Federation Leaflets on the table, I glanced at them and the only words that kept standing out to me were “will die.” The Doctors words, “…will die” also kept echoing in my mind. Dave later told me he felt the same.
One thing I do remember is Dave, with his head in his hands, saying “How are we going to tell everyone?” We both knew this was going to be as devastating for our family as it was for us and that made the pain hit twice over.
They then went on to explain that we had three options. Option 1: Danny could have a Heart transplant, but they explained this was unlikely as there were no babies hearts available, Option 2: Supported Comfort Care, they would make sure Danny was not in pain and allow and assist to die peacefully or Option 3: Danny could have high risk surgery. The surgery would be completed in at least three different stages and would take place at either Guys Hospital or Birmingham Children’s Hospital.
Oh, how relieved we were to hear we had a glimmer of hope. They left the room to allow us to discuss our options. We both agreed that we had no choice, Danny had been a brave fighter and stayed alive so long, he wanted to live, we wanted and needed him to live. We would go along with the surgery. We had to give him a chance.
When we told the professionals our decision, they very kindly said that they felt we had made the right choice.
It is harder to organise these things over an Easter Bank Holiday weekend, but Birmingham agreed to take Danny as soon as transport could be arranged. However, he needed a small operation to keep him alive until Birmingham, we gave permission for this to go ahead, but were so disappointed when the surgery was not successful. However, Birmingham were still willing to take Danny, so there was still hope.
Dave had the hard job of ringing everybody and now telling them things weren’t so good. I don’t know how he did it. I couldn’t talk to anyone or see anyone without bursting into tears. My mum and sisters had to hear the news when they were still seven miles from home after travelling back from Cardiff, now they were going to have to come back the next day to take us to Birmingham.
We spent time with our gorgeous baby again, holding his hand, telling him he was going to be OK. I couldn’t wait for there to be a time that I would get to see his gorgeous blue eyes again.
We then went back to the Ward, surrounded by the sound and sight of gorgeous, healthy babies. The following morning, Dave left the side room. It was Easter Sunday. A highly religious Mid-Wife, had not been warned that there was a “man on the ward” that morning. So she had quite a shock when our door opened, letting out the rays of sun from our side room window. Emerging from the Sunlight, she saw a tall man, with long blond hair, a beard and piercing blue eyes. She stood very still until Dave said “Good Morning” and brought her back to reality. She apologised and explained how she’d thought she was seeing an image of Jesus Christ!
Dave helped me out of bed, and to walk and I managed to have a shower, I didn’t have any clothes, so I redressed in my nightclothes. I sobbed in the shower, I was in physical pain, but feeling my flat, empty tummy just hurt so much. I wished my baby was still safe inside me where I could breathe for him again.
Family visited today, as they now knew their precious, newest addition to the family was going to be a long way away in Birmingham, this could be their last chance to see him.
Uncle Andy arrived and I spoke to him. He had some photos with Danny and Dave. Then the rest of our family arrived and I don’t know why, but I just couldn’t see anyone, apart from my Mum. I just wanted to sob and I didn’t want anyone to see me like that. She let me cry and told me he was going to be OK and reminded me I had to be strong for him. Looking back, I expect she was also telling herself this, to keep strong for her daughter.
So, I took some deep breaths and faced everyone. We all talked about him, how lovely he was, who he looked like, what a fighter he was! We had a walk around the hospital, took Great Gran and Grampy to get a cup of tea, got lost in the long corridors of the hospital, then they said their goodbyes and good luck to Danny and to us.
The Cardiff team gave us directions to Birmingham and again warned us not to follow. Again, the whole journey there we worried about him, especially as the minor operation hadn’t been a success. I just hoped he would make it to Birmingham safely, I couldn’t wait to see him again.
After travelling for another couple of hours, we arrived in Birmingham. Typical, when we were in such a hurry to get somewhere, there was a street procession/festival ahead of us, so the last leg of the journey had to be taken at a snail’s pace.
Then we got lost, I was in such a panic, but eventually we found the hospital and got to see our baby again.
He was in the Paediatric Intensive Care Unit (PICU). We were led in. The unit was vast and very empty as they had tried to clear beds for the Bank Holiday. We were met by Danny’s Consultant, who we didn’t know then we would see a lot of him over the years) and a PICU Nurse. From the moment we arrived in Birmingham, everyone was positive about Danny. They started talking about him like he had a future (“You’ll have to tell him off for putting you through all this when he’s older!” They were used to seeing babies and children with this rare condition. It was so reassuring.
We had a Cardiac Liaison Nurse to look after us. She put us in touch with the charity, Little Hearts Matter. They were a godsend and through them we met other families who’d been through the same thing, were going through the same thing or were about to go through the same thing, such as Danny’s amazing friend, Charlie.
I ate for the first time when we got to Birmingham. It hadn’t occurred to me that I hadn’t eaten since Thursday afternoon and it was now Sunday evening.
They made him stable and would keep him that way ready for the operation on Tuesday. The hospital was a children’s hospital, so there was no bed or medical care for me (they later organised Community Midwives to come out to see me). They had an empty side room and they put two camp beds up for us to sleep there. I remember that night’s “sleep” so vividly. The bright lights and beeping of Intensive Care, but knowing Danny was in such safe hands, I trusted them totally, and he was near to us, in the next room. We could go and see him when ever we wanted.
I did eventually sleep and when I woke up, I couldn’t wait to see Danny. But I was stuck on the camp bed! I tried and tried to get up but couldn’t find the core strength to do it, oh where was the hospital bed and hoist I so needed?! Dave woke too and pulled me up.
That day, I realised I needed clothes. I was an adult in a children’s hospital in my nightie! So Dave got me some from Primark.
We were allowed to be involved with the “cares” for Danny, wiping his eyes etc. They arranged for me to go to a milking room and use the electric pumps to express milk for Danny. I then had to drop it off at the “Milk Bank” for him. I found this difficult I have to admit. The milk was slow to come. Such a different experience to breastfeeding my baby girls. Days later, they let me bring the pump into the same room as Danny, with him in sight, it was a little easier, but still I was not producing enough of my own milk for him.
On the day of his operation, a room in the parent accommodation became available for us. A twin room with a TV and Video. There were shared toilets with bath/shower and a communal kitchen and dining room. You soon get to know other parents and settle into an everyday routine living there. We put up the few photos we had of Danny and I kept his first bodysuit, sleep-suit and hat on the desk. A shrine to him. Whenever we were in the room, I would hold his worn clothes to me smelling his newborn scent.
We brought him up to theatre and said our goodbyes to him. It was scary, he could die in theatre, but he would definitely have died if he hadn’t gone so I knew we had to do it. They told us to get out of the hospital and try to keep our mind off it or relax for a few hours. Obviously, they had gone through the high risks with us, but they had also said that if he does recover, he will need you more after the operation so make the most of this last few hours of freedom from the hospital.
We went into the city centre and bought supplies, microwave meals, toiletries and presents for Danny to give to him after the operation. We had to hope.
Finally we had the phone call. I stopped breathing and the world stopped moving while I waited for a clue from Dave’s response as to how it went. Danny had made it!
We rushed back to the hospital even though it was another few hours until he was in recovery and we could see him again. We put his teddies and toys in his cot. We tied his balloon to his cot, and we waited. It was still early days and not all babies can recover from major heart surgery like that, but we were taking baby steps, we wanted to see him awake again.
It was wonderful when he came through, he was still dopey from the medicine and cross eyed, but his eyes opened and he looked at us. Bless him.
After a few days, we were allowed to take him out of his cot and cuddle him.
This was bitter sweet. it was lovely to be closer to him, but I worried I would pull out a tube or wire, or hurt this poor love.
I loved putting cream on his smooth skin which was drying out under the heat tubes in his intensive care cot.
One day while we were in intensive care, I glanced at the security camera TV’s and had a huge shock, the screen showing the entrance to PICU had a giant, cuddly gorilla on it, but that wasn’t the shock, holding the Gorilla were some of our friends from home, who had travelled all the way to see us (tears are welling in my eyes again as this meant to much to us). They saw Danny in pairs and we took them for a cup of tea in our shared living room (we got told off for this!) they then invited us out for a bite to eat, Danny was in safe hands in Intensive Care but I couldn’t bare to leave him.
Luckily, we didn’t. We’d just drifted off to sleep and heard frantic knocking on our door. “Get up, you need to be with Danny now!”
We had to run to PICU in our nightclothes, we were then taken to the Quiet Room, this time at Birmingham. They explained that Danny was not good. He was having problems breathing and they didn’t know why or if he would make it. We sat in a corridor for about an hour while they worked on him. Shivering, in our nightclothes, but too numb to really feel the cold.
Finally, they stabilised him. They had found out the cause. As the sedative was now wearing off Danny and he was beginning to move around, he pulled out one of his pacing wires causing a bleed in his heart. We spent a few hours with him, so relieved he was OK, then went back to our room, unable to sleep in case we were awoken with a start like that again.
Our friends went home, but the support from friends and family, near and afar really helped us through this time.
He recovered well enough to be put onto a ward. Now, we were nearly “proper” parents, we couldn’t leave him in case he needed changing, feeding or winding etc. We couldn’t eat or sleep properly and had headaches all the time from the dry air atmosphere in the hospital. I was spending all my time breastfeeding Danny, then expressing milk for him to be topped up with through his Nasal-Gastric Tube, as he was too tired to feed himself fully from breastfeeding. Danny would get over hungry and over tired and it was so hard for him to latch on once he was upset, we would both be frantic and in tears. Dave eventually asked the nurses, could he give Danny a bottle of milk to ease the strain on me and try to calm Danny. His high energy feed did the trick and though I kept expressing milk to add to his feed Danny was now bottle fed. I did have secret hopes that once we were home, he would suddenly be able to feed from me again but it wasn’t to be. I’m so grateful that I got the chance later on to breastfeed my three healthy baby girls.
At three weeks old, Dave’s Uncle picked us up and we were going home. Danny’s first time in a car seat and a car as opposed to an ambulance. Poor little mite, having a long journey after all that surgery.
Here he is at home.
Finally, dressed in clothes with his monkey.
Finally, proper cuddles.
The lovely Health Visitor visited us every day and told us of a Mum, living around the corner from us, who was due to give birth to a baby with the same condition at Guy’s Hospital a few weeks after Danny. Such a strange coincidence. He is now one of Danny’s best friends at school.
Danny was still topped up every three hours with his tube feed. We didn’t have a baby crying in the night to be fed. We had the alarm going off telling us it was time to feed him!
One day, he pulled his tube out. My initial thought was that the Community Nurse would have to insert another new tube, something I hated seeing them do to my baby, but they were pleased with his weight gain so they said we could leave the tube out for a few days and see how Danny got on. He drank up all his bottles. Having the tube out agreed with him.
He now did normal baby things, playing, reading!
In his moses basket.
At four months old, we returned to Birmingham for Danny’s second heart operation (stage two). It was difficult, but again he got through it.
Then at four years old, he had his third and last (so far) major heart surgery.
That was the hardest one to go through and will definitely deserve it’s own blog post one day.
He is now a big brother to three little sisters.
He still gives us scares.
But, he lives a full active life. He attends Cubs, Gymnastics, Swimming, Dance and Drama. He loves playing out with friends and the park. He plays/bangs the drums.
We love him so much and are so grateful to have him in our lives.
I’m so proud of Danny for being my big. brave nine year old boy!
Happy Birthday Danny!
What an AMAZING family – you seemed to take it in your stride – so glad harry is the BEAUTIFUL HEALTHy youmg man of today