Parent Stories

Parent stories and experiences

Read some personal stories from parents at our London neonatal units as they generously share their experiences.

Tiny Miracles

from London Neonatal Units

Ruby’s Story

Born at 32 weeks

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Zara’s Story

Born at 24 weeks and 6 day

Ruby’s Story

Ruby was born at 32 weeks by C-Section which was planned due to a severe concealed placental abruption I had had a year before at 36 weeks, so we were aware that our baby would have to go to the NICU after birth.

Ruby was predicted to be around 3lb 9oz, but our bundle of joy arrived weighing 4lb 40z which was a good weight for the gestation, Ruby was breathing by herself and as soon as she was born, she was taken down to NICU and placed in the incubator. I remember feeling very strange at this point because although I knew my baby was in the best place, getting the care she needed I was not with her, I was not even in the same ward, and I couldn’t see her until I was a bit better to be able to be taken down to NICU to see her. For a mother this is hard and can be so scary for people who are not familiar with how fantastic NICU is, I fortunately was familiar with NICU and had seen the fantastic work that the nurses and doctors did there each day due to having worked in the hospital myself.

It is a very strange feeling knowing you have had a baby and not being with them all the time, I think this can be one of the hardest things a parent goes through when their child has to be taken to special care, you can feel pangs of guilt that your baby is without you, you can feel quite lost in yourself as bonding with your child becomes extremely different to the norm, for some it can be scary and traumatising living through the unknown of what lies ahead. I remember feeling a yearning to just be near Ruby as much as possible which was hard as I had had a c-section, I had a toddler at home that was not allowed into the ward, and I was living through a trauma of only a year previous our baby daughter Libby passing away. Life was very surreal for us in this moment.

As soon as we were able, we went to visit Ruby, the unit was quiet with 4 room stages, starting in room 4 the babies needed to work their way down to room 1 where after that it was home. We liked this way because it almost was like knowing where your baby was at without having to ask how long until we can go home. The first time I saw Ruby she was lying in the incubator, so small, so fragile with a feeding tube in as she had not developed enough to know how to swallow, she had heart monitoring stickers on her little body and she was fast asleep breathing without any aid which made me feel very hopeful, I was amazed that she was my baby, it was almost hard to believe. We just sat and stared at her for a while able to touch her hand through the holes, there was a nurse in the room, but we didn’t interact that much, she was very busy as there was a few babies she was looking after, all we wanted to know is, was she going to be alright?3 days after Ruby was born, we came in to see her and she was on a CPAP machine, this is a big machine to help her breathe, it was a shock at first as we were not aware Ruby had been put on it, it was worrying as we were just stood outside of the room looking in at our baby a year on from losing our daughter, which made it all the more worrying. The nurse was very kind and soft and told us not to worry, Ruby had been having shallow breathing and they were giving her a caffeine boost to help her, I was pleased because I had noticed the shallow breathing the day before and this made me feel very reassured that the doctors and nurses were keeping a close eye on her. There is no way to describe how we truly felt during this time as we were in a phase of trauma from the previous loss yet hoped that Ruby would be alright, our heads were fuzzy from everything that had happened and was happening now.

We had to wait a while before we could hold Ruby which was sad, most people can hold their babies when they are born, but being premature you can’t and that can be quite distressing even if you are prepared for it, I will never forget the first time I was allowed to hold her, I couldn’t even feel her, it was like lifting a blanket, She was so small and so light, although I knew that I will never forget feeling like I wasn’t holding a baby, it was almost like I wasn’t prepared to not be able to feel the weight of my baby, I remember it being a strange feeling. We were only allowed to hold her for about 10 minutes before having to put her back in the incubator and those 10 minutes were treasured each time, we held her.

Zara’s Story

My second daughter was born at 24 weeks and 6 days with sepsis. Before I had her, I knew nothing about prematurity and had no idea that babies born so early could survive. I asked the doctor what her chances of survival would be, and he said around 50 percent.

The cause was an infection I’d contracted, which had spread to the placenta and transferred to my baby in the womb. She was in a very critical state, and I was very poorly too; we both had to have intravenous antibiotics and she was taken straight to the neonatal intensive care unit (NICU).

My baby spent 5 months – 150 days – in hospital before coming home. During that time she suffered from chronic lung disease, metabolic bone disease, multiple bouts of sepsis, and had to undergo several surgical procedures, including PDA ligation.

She’s now a happy fun-loving little 4-year-old, who loves Gabby’s Dolls House and somehow manages to sneak on the fluffy Christmas tights in the middle of July! She still suffers from chronic reflux and is under the Vascular Team at Guys & St Thomas for the blood flow in her legs. But her strength never ceases to amaze me and there’s not a day that goes by that I don’t marvel at how far she’s come given her tricky start in life.

Her birth and neonatal experience spurred me to write a book called Twenty-four Plus Six about the journey a family goes through when their baby is taken into neonatal care. The book honours the incredible strength that we parents somehow find in the midst of trauma. It also gives voice to the potentially long-lasting impact a hospital stay can have on the whole family.

Libby’s Story

The 3rd November is a day I will never forget.
For me it was the day that changed my life, I lost my beautiful baby girl Libby but also watched my wife nearly die. My emotions were mixed, my heart was broken and at the same time willing my wife to survive.

My wife was 36 weeks pregnant, I thought we were out of any type of danger zone as I never realised childbirth could be so dangerous if I’m honest. My wife experienced a severe concealed placental abruption, we were told she was likely to die , along with our daughter having a tragic end of life.
I remember standing in the hospital I worked in looking at my wife’s lifeless body it was like a bad dream you just were not waking up from, the most scariest moment for me was seeing blood come from her eyes, I will never forget the fear I felt. We already had a little girl, Lia, the questions running through my mind at this point were What if my wife dies, how was I going to look after Lia alone, how do I tell Lia about her mum and her sister, how will I ever deal with all of this and carry on, my life felt like it was being taken away in front of my eyes.

My father-in-law, Mother-in-law and Sister-in-law who was only 17 at the time were all with me at the hospital, my mother-in-law was also a nurse at the hospital and had been called down from her ward when my wife arrived in the ambulance.

Being told Libby had died was a shock to us all, I was with my father-in-law when we received the news and we were in a state of shock, I felt sick , I felt broken and I felt lost, I could not believe what we had heard.

My wife was in a critical state at that moment my emotions switched to willing her to survive. Watching her laying there fighting for her life made me feel totally helpless, I couldn’t do anything to help i could only watch the amazing consultants at work. When blood started coming from her eyes, ears nose and mouth I knew this was not looking good, she went into toxic shock and was rushed into surgery as the consultant said she will go in to cardiac arrest. Waiting outside that theatre room felt like forever, my in-laws and myself didn’t pass one word to each other, we couldn’t speak, I paced up and down so many times and at one point vomited I imagine through shock, I felt totally lost, scared, heartbroken, terrified and totally numb it was so unbelievable this could be happening.

Eventually after what felt a lifetime the consultant appeared, explaining unbelievably that my wife’s womb was not ruptured and she was alive but very critical he wasn’t sure she would survive the next hour, my world was falling apart, the priest was called to give her the last rights and all family were told to be notified to be able to say their goodbyes. I cannot even begin to express the feelings I was facing. Not only had I lost my daughter I was losing my wife as well.

Luckily after a few days the consultant had told us it was a miracle my wife was alive, he could not medically explain how she had survived but she did., she was very ill, but she survived, my emotions were overwhelming I was so sad at the loss of my daughter but so happy at the survival of my wife – confusing mix of emotions.

I didn’t take up the councillor that was offered, I wasn’t ready to speak it out loud or truly face what had happened, I was embarrassed in a way of expressing my feelings, being seen to cry, the feeling of helplessness that I felt, I was empty and lost and felt so alone although really I wasn’t I just couldn’t face it, I felt like I was meant to be strong but in all honesty I didn’t know how to be.

Libby would be 18 now, I made some terrible choices whilst dealing with my grief my coping mechanisms were the wrong ones but it has taken me years to see that for myself, I was angry for a while, in denial for a long time and now I feel sadness, the situation is one no one ever expects to face but I am so proud of my wife for her strength and her patience with not only her grief but mine also.

We had another little girl Ruby, she was premature being born 2 months early and was born just over a year to the day we lost Libby. Ruby was born on the 20th November. We celebrate both of our daughters in the same month , which I feel has been helpful in healing to some degree as that November month holds some tragic memories but also some amazing ones. My wife being pregnant so soon after the loss of Libby was a total shock and again bought all the feelings of the trauma to the surface during the pregnancy, it was terrifying, but again my wife’s strength through all of this is something I will always admire.

We are now very happy, we have 3 beautiful girls Lia, Libby and Ruby and we got through the most traumatic time in our lives together. They say time is a healer, I don’t know if I agree I would say in time you learn to cope and carry on, Libby will always be remembered , she is my little princess.

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