I am a mother of a little girl called Betsy. She was born on a sunny summer’s day in 2017, by emergency C-Section, weighing 3lb 7oz, at 31 weeks and 6 days gestation. Betsy is a fighter, stubborn and determined to overcome every obstacle that comes her way. Betsy also has Down’s Syndrome.
Consider this situation. You have fallen pregnant with your first child and are absolutely delighted. You have decorated the nursery, bought all your essentials and prepared your life for the arrival of your long-awaited child. You have chosen a name for your beautiful baby girl. It is your Grandmother’s name and she will be welcomed into your family with unconditional love.
At your screening test, you choose not to screen for Down Syndrome as you and your partner have agreed that it wouldn’t matter to you if your child had a learning disability. You would love her the same, if not more. Fast forward 3 months and you are 7 months pregnant. You have tested positive for Gestational Diabetes and are having extra scans regularly to monitor the size of your baby. You attend a routine scan to measure your baby’s size and, at this scan, your world changes forever. Your placenta is not managing to pump enough blood through the umbilical cord to your little baby girl. The pressure in the umbilical cord is too high and won’t let any blood through. Your baby has diverted the tiny amount of blood she is receiving to her brain to try and keep herself alive. She is moments from dying.
You are whisked to a different specialist hospital and told your baby will be born by emergency caesarean section today or tomorrow. You are given to steroid injections to mature your baby’s lungs and give her the best chance of survival. A further scan reveals your baby has Duodenal Atresia, which means the situation has changed. Duodenal Atresia is where there is a membrane grown across the intestines, meaning that the passage is blocked, and your baby will be unable to feed. This is a condition that is related to Down Syndrome and is vital that it is picked up pre-birth in order to plan for how the child will receive nutrition when born and when they will be able to have the surgery to correct this condition. Your baby has stopped growing and weighs an estimated 3lb 7oz. You are now told that your baby needs to be bigger to have this operation. At this point you are told by a consultant that your baby has a 2 in 3 chance of having Down Syndrome. You are offered an amniocentesis and it is performed in order to confirm this. The surgeons and doctors need as much information as possible about your baby girl in order to plan for her birth and subsequent treatment.
You are admitted to hospital and have scans on a daily basis to monitor the levels of blood flow from the placenta. You are in an empty bay, completely alone. You can hear the sounds of women talking in other bays and televisions quietly muttering. You sit up through the night in your silent room pressing the button on the heartrate monitor to record every time your baby moves. You will do anything to ensure she survives. You cry a lot. A midwife asks you what the problem is, and you explain your baby is very sick and you would like to talk to a counsellor please. The midwife states there are no counsellors available to talk to you.
Four days later the results of your amniocentesis arrive back. You are ushered into a bare room, with nothing but a box of tissues on the table. You are told that ‘I’m sorry, your baby does have Down’s Syndrome’. You are given 2 minutes to process the information, while feeling a whirlwind of emotions. You are then asked, promptly, if you would like an abortion. You are 7 months pregnant. You tell the consultant that you would never abort your baby because they have a learning disability. From here, this is a story in itself, but we are here to focus on the Neonatal journey.
On a Friday morning, after being in hospital for 2 weeks, the regular ultrasound you have been having every day to monitor the blood flow from the placenta, shows that the blood flow is greatly reduced today and that your baby girl’s movements are stopping. Your consultant makes the decision to perform an emergency caesarean and you a prepped for theatre. In theatre, there seem to be hundreds of people in the room. In reality, there are probably about 15. They know your baby has a distended stomach from being unable to pass amniotic fluid through her system. They know she will be unable to breathe on her own when born. They know she has Down’s Syndrome and will by hypotonic. Your baby is born at 12.39. She tries to cry. It takes 3 attempts to inflate her lungs. She is wheeled past you with an oxygen mask on her face and taken straight to the Special Care Baby Unit.
And this is where our neonatal journey began. Due to trauma, my memories of the time we spend in hospital are fragmented, so please forgive me if this reads in a halting manner.
After Betsy was born, I was in recovery for hours and was asked if I wanted to breastfeed. I started expressing colostrum into a syringe. I knew Betsy’s immune system would be compromised as a result of her condition and was determined that she have access to mine, through breast milk. I had no idea how this was going to work, as Betsy was in an incubator, had a tube inserted to drain the amniotic fluid from her stomach and intestines and was nil by mouth due to Duodenal Atresia. Nevertheless, I continued.
I remember being wheeled up on my bed to meet Betsy. I stared at her through the glass, barely able to see her for the wires and tubes. She had dark curly hair, like her Dad. She was sleeping. I couldn’t touch her or get anywhere near her. I was then wheeled into a bay in the ward to wait for the feeling in my legs to return. I remember hearing other mothers in adjacent bays comforting crying babies and watching people leave with balloons and their babies in car seats.
The ward was so very busy that I asked repeatedly if I was allowed to get out of bed yet. I had lost a lot of blood in theatre and was told I had to have a member of staff with me if I was to get out of bed. At near midnight a midwife apologetically helped me into a wheelchair and took me through to the SCBU to see Betsy. It had been 12 hours since she was born and I just wanted to touch her to make sure she was real. I got to hold her. She opened her little eyes and looked right at me. I remember the nurse saying ‘That’s the first time she has opened her eyes. She just wanted to see her Mam’. I held her fragile little body against mine. In the back of my mind I thought that this might be the first and last time I would hold her.
In the morning, after getting up every 2 hours to express, I walked through the hospital to SCBU with my syringes of milk for my baby, clutching them like they were gold dust. I was allowed to wipe a small amount on her lips and the rest was stored in the freezer for after she was able to feed. Ward round confirmed that Betsy was on the list for a Duodenal Atresia repair as no food would be able to pass through her system. It was a Saturday and over the weekend they only perform emergencies. I discovered that her surgery might not be today. I was consumed by the thought that she must be hungry. The day passed in a haze of sitting looking at Betsy through the incubator wall and expressing every few hours. I realised in the evening I hadn’t been back to my ward to have any pain relief for my c-section. That evening Kurt got to hold Betsy and so did I. She tried to wriggle down to get milk, which was utterly heartbreaking.
Sunday came and Betsy was still awaiting surgery. There were some emergency surgeries that needed performing and we were told Betsy was stable so wasn’t classed as urgent. She was called at lunchtime. The transportation incubator arrived. It looked terrifying. Betsy was transferred into it and we followed it being wheeled fast through the corridors to the operating theatre. People stared, some looked at us with sympathy, pity even. A tiny baby in a missive metal incubator surrounded by wires and oxygen canisters is not something people see often. We kissed her goodbye at the operating theatre doors and went back to the ward to wait. I felt like time just stopped while she was in theatre.
After what seemed days the call came up to the ward that Betsy as survived the operation, it was successful, and she was back in SCBU. I knew she was going to be on a ventilator, but I wasn’t prepared for the shock of seeing my tiny baby with a huge tube stuck in her mouth and a machine breathing for her. She was to be kept sedated for 2 days to allow her body to recover from the shock of the operation.
The days passed. We sat and stroked her head with one finger. Listened to the beeping of machines. Learned how to change a nappy in an incubator. One day the ventilator was removed, and Betsy was on low flow oxygen. Another day the tube draining fluid from her digestive system was gone. The next day Betsy was moved to a different room as she no longer required a 1:1 nurse.
At a week old, Betsy had still never been fed. Her surgeon wanted to make absolutely sure that the surgery had worked so we were waiting for Betsy to pass meconium to show that her intestines were working. The day she did we felt like having a party. And from this point we were allowed to start feeding her tiny amounts of milk though her nasal gastric tube. I truly felt like this was the start of her recovery.
I was discharged from hospital and, while waiting for a room to become available in the parent’s house in the hospital grounds I had to go home for a couple of nights. I sat in the bath in our house feeling utterly empty and just cried and cried. The last time I sat been at home was a month ago and I had been pregnant. Now I was here, without my little girl. I couldn’t bear not being with her. I had nightmares. I awoke screaming and crying. My partner found me looking under the quilt and cushions in the bedroom in my sleep. When he asked me what I was doing I relied ‘Where’s Betsy?’ I still have nightmares about her being taken away from me 17 months on. I think, perhaps, I always will.
I moved into a room in the family accommodation, although Betsy wasn’t with me, I could be with her within 5 minutes. I continued with the rigorous expressing schedule, every 2-3 hours. I was struggling, but just continued. We spent days sitting with Betsy. ‘Cares’ in the morning and evening, meant we were allowed to change her nappy and give her a bed bath with cotton wool and sterilised water. We learned how to change a Sats monitor from one foot to the other and how to correctly position the ‘nest’ so stop Betsy’s legs from falling into a breech position. We learnt not to panic at machines beeping and how to position her to allow her oxygen saturations to be at an optimum level. The exceptional staff helped us with kangaroo care. Betsy always saturated well and her heartrate stabilised when lying on our skin. We sat for hours with her every day.
We formed friendships with the parents of babies who were Betsy’s roommates. Friends who were hold most dear today.
We lived life in the bubble of that ward. Washed hands, dried hands, sanitised hands.
After being moved to the least dependant zone, we were asked if we would like to apply for a transfer to a hospital that was closer to our home. Although we were terrified of leaving the hospital, who had saved our baby girl’s life and had supported us so much, we agreed that Betsy didn’t need such a high level of care now and it would mean that I could move home. A couple of days later a space came up at our local hospital and Betsy was transferred.
The incubator was the same heavy-duty transportation incubator. Betsy’s first journey in life was in the back of an ambulance. The same worried glances followed us an she was wheeled out of the hospital doors and into the back of the ambulance. I remember waving goodbye to all the other parents and staff in the SCBU as we left with tears in my eyes.
We arrived at our local hospital. Betsy was transferred to an open cot in her own room. We left for the night and I went home, only a mile away, and slept in my own bed. I returned to the hospital first thing in the morning. As I approached Betsy’s room I saw a team of staff surrounding an incubator. I ran towards the room asking what was going on and why was she in an incubator. A nurse took me by the shoulders and turned me around and out of the room saying, ‘that’s not your baby, she’s been moved into here’. I entered a sterile white room where my daughter was in an open cot in the corner. Along the wall were 3 other babies, with parents sitting in silence staring at their children. The atmosphere was tense. I washed my hands and sat down next to Betsy. I went to take her out of her cot to hold her, when another mother whispered, ‘I wouldn’t do that. You’re not allowed to take them out of the cots until nurse has taken their temperature.’ I placed Betsy back in the cot. My heart sank.
On ward round I asked what the procedure was. I had been used to being involved in my daughter’s care at the previous hospital and was shocked and frightened at the atmosphere in this new SCBU. I asked why after being here for 2 hours I was still not allowed to hold my baby, who needed human contact in order to help her develop. The senior nurse said that they ask that we do not touch our babies until temperatures have been done. We were told to ask if we could hold our babies.
What followed was weeks of feeling frightened to be a mother.
Having spent over a month being supported to spend as much time with my daughter as possible, to hold her, despite wires, to do kangaroo care, to carry out temperature checks, ng tube feeds and be involved as possible in looking after her, I was now stripped of my rights to be her mother. I was frequently told to go home, that sitting in the chair all day wasn’t any good for me and that Betsy would be fine without me. I ignored this. I stayed with my daughter every waking minute or every day.
When the day came for us to room in the family room to see how Betsy coped without a monitor, I had been ground down to the point that I no longer trusted my own judgement. She seemed too cold, I put a little cotton hat on her. The nurse came in and took it off, saying that I was silly for doing it. When she took her temperature, Betsy was too cold, she put the hat back on. Another nurse, in good faith encouraged me to breastfeed during the night instead of giving Betsy a bottle. Knowing a lot about Down’s Syndrome by this point I knew that Betsy’s hypotonia was worse when she was sleepy and preferred to give her a bottle of EBM during the night to see exactly how much she had taken. She seemed disappointed in me that during the night I decided to bottle feed her.
We left at lunchtime 2 days later. We arrived home. I felt our house was filthy dirty. That Betsy would suffocate from the dust in the air. Washing my hands and drying them on a towel wasn’t good enough. The towel wasn’t sterile. Maybe there was mould in the washing machine. Betsy’s Moses basket didn’t have a raised mattress at one end like in hospital. I made a makeshift tilting mattress by placing blankets underneath it. She wasn’t even due to be born for another 2 weeks.
We were relieved to be able to take our little girl home, but strangely didn’t feel like celebrating. It was almost like we had been waiting for the day for so long that it didn’t seem real when it finally came. The effects on us from our neonatal care journey became immediately evident.
I felt that our house was too dirty for Betsy to live in. I cleaned and cleaned everyday trying to get that hospital grade cleanliness. An absolute impossibility. I sacrificed time I could have been spending with Betsy to clean. Everyone was asked to clean their hands before coming into the house.
I watched her breathing constantly. Not having a nurse there to reassure me that she was ok was terrifying. I stayed awake a lot of nights watching her breathe. And then one night rang 111 about her breathing difficulties. They sent us straight to A&E to receive oxygen, which only served to confirm my worries.
I still had nightmares about Betsy not being with me, that I had lost her or that she had died. Even though Betsy was now sleeping in a Moses basket next to my bed, I still couldn’t shake the feeling of emptiness, like she wasn’t with me.
I went to a local baby group and found that they were on session 3 of the program and on to discussing weaning. I desperately needed to talk through what had happened, but they had all had standard births and were past the point of wanting to talk about this anyway. Someone mentioned they had never met a ‘Down’s baby’ and peered at her. I was so shocked I said nothing. What I wanted to say was ‘My daughter is NOT a Down’s baby. She is a little girl called Betsy. She is a person. A person who happens to have Down’s Syndrome, which is nothing more than an extra chromosome’. Needless to say, I didn’t return to that group.
I ploughed on with trying to come to terms with everything, while becoming a Personal Assistant to Betsy, scheduling all her follow up appointments and referrals. On reflection, I’m not sure how I managed to put all my fear aside to function normally.
I went back to work after 6 months, as we weren’t able to cope financially on statutory maternity pay. This meant that after discharge from hospital I had had 4 months Maternity leave. I had to stop breastfeeding, as my work is not conducive to expressing and storing milk during the day. I was devastated.
After 9 months back at work I ended up being referred to a counsellor and diagnosed with PTSD. I still have counselling for trauma and there’s a long way to go before I am on top of it. I don’t think some of the experiences from neonatal care will ever leave me.
But watching Betsy smile, babble and play is a balm that soothes the horror of her near death and subsequent brushes with it. I think it’s made me appreciate what I have in her. I have the most beautiful little person by my side, my best friend, my inspiration and strength.
Life adjusts. We still spend a lot of time in and out of hospital. I still have nightmares. I still dread driving past our local hospital and even more so hate having to go to the A&E department there. I still feel like my house is dirty and I still wash my hands constantly. The skin peels off around my fingernails. I carry antibacterial gel with me wherever I go. The sound of beeping makes me feel sick. Betsy still has a scar on her foot from the sats probe and collapsed veins in numerous places from cannulas and long lines.
I work full-time. I still feel like I don’t see her enough. I rarely go out. I prefer to stay in with my little girl who I spent months not being able to hold. I kiss her a lot.
Our daughter lives. Our 1:10,000 little miracle. Our daughter smiles and giggles. Our daughter plays with her friends and family and is loved beyond comparison.
Our daughter deserves this beautiful life she lives.
Thank you so much to Rachel for being so brave and sharing Betsy’s and her own journey with us.