Oriana was 10 hours old when we were given her suspected diagnosis.
I am a first time mum – this was my first pregnancy and all seemed totally normal throughout. I had extra scans due to my BMI being below average, but they all showed a very active and perfectly healthy baby kicking away inside. My husband and I are both under 30 and so aren’t a high-risk category for any complications during the pregnancy, but agreed to the test carried out at 20 weeks gestation to check for the possibility of Down Syndrome. The results came back confirming that we were indeed at very low risk of the baby having Down Syndrome (about 1 in 3000+) and so we were not offered any further tests and never thought about it again.
After a couple of spells of reduced movement from the baby at 38 weeks, it was decided that I should be induced. My bump was small and they were concerned that the baby was no longer comfortable. My labour was very short and intense and mostly without pain relief, leaving me in a lot of shock. The baby’s heart rate kept dropping as the contractions were so frequent and intense, but once she was born the midwives announced we had a baby girl, and reported that they were pleased with her health and that she had scored 9/10 on the apgar score. I didn’t get that rush of love and emotion that a lot of mothers describe; I couldn’t even open my eyes to look at her for the first 15 minutes as I tried to battle with my exhaustion and shock. I was shaking from head to toe and in a cold sweat and so my husband held her first, it was another half an hour or so before I had the strength to put her against my skin.
In the following hours however, she was taken away to be treated for suspected sepsis. She could not regulate her temperature, was very jaundiced, couldn’t suck or take any milk, and was struggling to wake. I had to hand express colostrum into syringes to feed her and it wasn’t enough to give her strength. After being in the neonatal unit for a couple of hours with our daughter, the consultant and nurses came into our hospital room to speak to us about the course of action they were taking to treat the sepsis. After discussing the treatment, the consultant then went on to say “…and I don’t know if you have noticed but your baby looks a little different from other babies, the facial features she has combined with a few other factors make us suspect she has Down Syndrome…”. The doctor was very gentle with his news, but then carried on talking about how she may cope in the future and where we would go from here, but I hadn’t managed to keep up with the information following that initial sentence.
You could tell it was hard for him to break the news to us, and the nurses were so kind and gentle. I remember feeling that my face had gone really hot and that the room was swimming, it was almost like the doctor’s voice had been amplified to an uncomfortably loud volume too and I was struggling to take anything in. My initial reaction was one of complete shock – they must be wrong, how could it have never been picked up before? Especially with my extra scans? We had everything checked! The shock then turned to fear as I realised this was something that I would now have to work with for life; forever my future would be changed to include Down Syndrome whether I felt strong enough to handle this or not. My mind raced ahead to the coming years- I was terrified I wouldn’t be strong enough to be her mother, worried that she wouldn’t get on well at school or make friends, concerned for our relationship as mother and daughter, and wanted answers on how other people would treat her and if she or I would ever be happy again. No one could properly answer any of these questions, and that only increased my fear of the unknown and our future. I would say I maybe felt like this for the first month after her birth before I truly knew that everything would be OK.
Later that evening, we were told about the link between heart defects and Down Syndrome. We had an ultrasound booked due to a heart murmur they had picked up, and the ultrasound revealed three heart defects – a hole at the top of her heart, a substantial hole of 6mm between the bottom chambers of her heart, and an additional passage between the two main arteries of her heart. When she was less than a week old blood tests also revealed her to have a congenital under-active thyroid. Despite this though, our daughter never had any respiratory issues at birth and her thyroid condition is able to be managed very effectively with daily medication.
When we were given the news of Oriana’s diagnosis the consultant advised us to try and refrain from Googling information. He said this was because a diagnosis of Down Syndrome now is totally different to a diagnosis ten or twenty years ago – he was worried we would read outdated information. As a child I had grown up closely with another family whose eldest son had Down Syndrome. I remember learning to sign nursery rhymes, playing with him, and going on holidays with the family – but he is now in his twenties. I still see him around the village where he catches the bus independently. I have had conversations with him about the college course he was enrolled on and his interests in catering. I remember always thinking that his parents did an amazing job of raising him in much the same way I saw them parent his younger siblings; he was always encouraged, included, and supported. Despite the twenty year age gap, I know my parents have discussed Oriana’s diagnosis with them and heard about his experience with having holes in the heart too. In fact, I think my mother spoke to his parents on the evening Oriana was provisionally diagnosed – it just seemed like the natural thing to do; to reach out to someone else who was already in ‘the lucky few’ club.
The hours, days and weeks following Oriana’s diagnosis were very hard. We had back to back observations, appointments, and phone calls with what felt like a constant stream of bad news. I was still in a lot of physical pain, but I remember thinking that it felt right – it matched how I felt on the inside and everything about me was hurting. For almost 9 months I had imagined my life with another baby and with another type of future… and it was a grieving process to come to terms with the fact that everything I had pictured was wrong. My baby was very different to the one I had imagined, and my future was going to be very different. I remember looking back on photos of my baby shower or my pregnancy and feeling like I was still due the baby. It took me a number of weeks to understand that specific pregnancy was related to the baby I had in my arms. I also felt a lot of guilt as a woman and as a mother. I felt my body had let my little girl down, that I had somehow formed her ‘incorrectly’ & failed at something that should have come so naturally. I worried other people would look at me as a failure too, & that my body had let my husband down as well as my little girl. I know now this isn’t the case, and that she is the most perfect gift given to me by God, & that she was designed this way from conception.
I also felt jealous when I saw other new mums, or mums-to-be. They were going to get the experience I never had; they would have those blissful first few days with their baby and just be able to enjoy them and concentrate on falling more in love with their little one. They wouldn’t have a constant stream of nurses and consultants in their room, trips to the neonatal dept. twice a day, scary diagnosis and tests one after the other, and having hard conversations as we tried to explain to everyone how much our world had changed in the last few days. She was my first baby and I felt robbed of our first few days together and the experience I thought we would have as I welcomed her to the world. I was so jealous of the other mums who got what I thought I should have in terms of an experience without so much hurt, grief, and fear.
My husband initially had to face a lot of the emotions that I did – shock, fear and grief. However it seemed he processed these feelings more quickly than I did and was a lot less scared about the future. I think this is due to him being someone who lives in the present much more than I do (I am working on this!) and so was able to enjoy what a perfect baby she was on a day-to-day basis without worrying ahead about what type of school she would attend and whether other children would invite her to their parties! From the moment she was born you could tell he absolutely doted on our little girl, and still now is obsessed by her and how perfect he finds her. This never changed when we were given the diagnosis. He found it easy to shower her with love. He wouldn’t stop taking photos of her and didn’t want to put her down!
It is still very early days to say how this experience has affected our relationship, but we both had a conversation about how we felt as soon as the consultants left the room on that first evening. We agreed that it didn’t change how much we loved her, & that together we would provide the best life for her that we possibly could. We felt fiercely protective of her. This whole journey has made it so important to keep talking about how we feel, so that neither one of us feels isolated by any emotion such as grief or fear, and so that we can support each other through it all.
When it came to announcing Oriana’s birth to our friends and family I worried how people would react to an ‘additional needs’ baby being brought into the circle, and whether they would find it awkward or uncomfortable. I needn’t have worried though, their responses were all so positive and encouraging. I remember taking screen shots of the text message replies we got, and reading the encouragement back to myself at night when I was alone in the hospital room. Since leaving the hospital she has been overwhelmed with love, visitors and cuddles. I would go as far as to suggest that she has preferential treatment!! I no longer feel anxious about how people will respond to Oriana, and have been able to take strength from all the love and support offered to us.
It has been a process in terms of looking at Oriana and not seeing Down Syndrome. I remember being in hospital when she was about a day old. We took our baby to have her first wash and a nurse held her, showing us the best way to do it. Seeing Oriana objectively in someone else’s arms with her hair wet and slicked to her head, I suddenly saw the typical features of Down Syndrome that the consultant had seen, and I remember crying in the bathroom as I could only see her diagnosis. The more time that passes though, the more I know of ‘her’ instead of the labels given to her. The more of ‘her’ I got to know aside from the list of symptoms and ‘typical features’, the more I was able to enjoy her and move on from the fears I had. I was able to embrace the diagnosis as part of the thing that made my daughter so easy for me to love, and so amazing. Most days now I totally forget her diagnosis as her personality, perfect features, and expressions, override a list of symptoms that initially described my daughter.
People have asked me if I thought it would be better to get the DS diagnosis during the pregnancy or after birth. I have mixed views. Whilst my husband and I wouldn’t have made any different decisions if we had found out about her diagnosis before birth, I think it would have given me more time to adjust. I had a very fast and shocking birth, and so to have further shock piled on top of this 10 hours later lead to a very traumatic time. I think I am still coming to terms with this experience even now. It meant I had to process grief, fear and shock whilst in significant physical pain and with hormones all over the place. Being able to find out during the pregnancy would have allowed me to imagine a more accurate version of our future, prepare myself emotionally whilst I was feeling less vulnerable, and start researching and speaking to other mums of babies with DS. However I think there is a lot to be said for receiving the diagnosis when your beautiful baby is already in your arms – I was comforted and reassured that my baby was still amazing in every way, and that I would love her just as much as any other baby I may have given birth to. I imagine it must be very hard to get the diagnosis when your baby is still so much of an unknown quantity.
In conclusion, my life has changed massively – just as a new mother, let alone a mother to a baby with Down Syndrome! However, I spend a lot more time than a typical new mother in hospitals, working on feeding, her neck strength and exercises, and making sure she has all the support I can find to give her the best start in life. Our schedule is hectic, but my life is probably filled with more love and support than I ever knew I had before. Little Oriana is now 3 months old and has melted our hearts with her first smiles, loves squawking and gurgling, licking anything with a fluffy texture, and has just mastered breastfeeding. She makes short, sharp and fast movements during playtime like a light-footed boxer, but is peaceful and calm for the rest of the day. She sleeps well, does exceptionally with her health issues, and is an absolute blessing to have. We truly feel privileged to have been chosen as her parents.
Abbi is in her late twenties and has been married for just over a year to Stefan. The family resides in Leicestershire, England. She is the oldest of four siblings, Fine Art graduate, family person, and a perfectionist. Tending to be slightly anxious in new situations or when faced with change, she prefers to spend free time at home with friends & family instead of being out exploring & thrill seeking! Follow Abbi along on Instagram @Abbi.favellstapleton