Be bold, be brave and be kind always

Today we have a guest blog written by Maria of Hormones and Chromosomes, thanks for letting us share!

I am Maria and I am 43 years old. I have been with my husband Neil for 22 years. We have three children. Eleanor aged 19, Joseph aged 7 and Nancy aged 5.

I was 23 when I had Eleanor. She arrived on 18th July after a very text book 2 ½ hour labour, latching straight onto my breast minutes after delivery. She is wonderful and Neil and I have adored being her parents, watching her grow into an amazing young woman. We always wanted more children and for Eleanor to grow up in a home like the ones we had grown up in, noisy and full of children. But in the years that followed this never happened.

When Eleanor was seven, after several attempts of a fertility drug named Clomid, I was sent for an exploratory laparoscopy. I was diagnosed with stage 4 endometriosis and had extensive damage through lesions and cysts on my ovaries, fallopian tubes, uterus, bowel and bladder. A lovely consultant was brutally honest and told me my chances of conceiving either naturally or artificially were so low that he advised against any further fertility treatment. We were devastated but we knew how lucky we were to have Eleanor and had been fortunate enough to experience parenthood at least once.

Five years passed and in early 2014 I was out grocery shopping. I couldn’t shake the nagging feeling I had and slipped a pregnancy test into my basket. I scanned for the ladies and decided that I would take the test there and then, if Neil knew I had taken a test he would think I had gone completely bonkers and anyway when it was negative I could dispose of it and no one would be any the wiser.

Only it wasn’t negative.Three tests later I cartwheeled out of Asda and sat shell shocked on the bench. We were going to have the baby we had dreamt about for over ten years. You can only imagine the elation that followed. Friends and family cried with happiness, everyone was so excited not least Eleanor, for her years of birthday wishes had just come true. She was finally going to be a big sister.

Once I had reached the 12 week mark the gifts started rolling in. Everyone that knew us knew exactly what this meant and wanted to share in our joy. And so the pregnancy was a very happy, very unremarkable one until we got to 33 weeks. The baby kept playing up and we became a fixture in the foetal medicine unit. By the third occasion of reduced foetal movements I had a scan. They noted that the baby was very small for its gestational age. After a consultation with the doctor and midwife it was decided that I would go in on the 24th August to be induced at 36 weeks. Of course we were a little worried but being perfectly honest we were thrilled we would finally meet our baby. We had waited long enough.

So at 1pm on that Sunday we went into the maternity ward, like two small children on Christmas Eve. The induction didn’t go as planned. My baby’s heart rate kept becoming erratic. We were a little alarmed but had complete faith in the staff. At 1am on 25th August I was taken down to the delivery ward to be placed on a drip, at 2.30am my baby’s heart rate became erratic again. What Neil and I now describe as the “maternity SAS” filled our room already scrubbed up and ready to begin. I would need an emergency C-section as the baby needed to come out now, only devastatingly Neil couldn’t stay with me as I would need a general anaesthetic. I was rushed into theatre sobbing on my bed. This was not how it was meant to be.

Joseph was born at 3:11am and I met him in recovery shortly after. He was beautiful with a shock of golden blond hair. Weighing 5lb 4oz he was perfect and through sheer ecstasy and probably anaesthesia and morphine I think I could have floated with happiness.

Neil went home to get showered and collect a very excited big sister whilst I rested on the ward. Several hours later a midwife came to get me. We would be moving to our room but first the paediatrician needed to see Joseph. I explained that Neil had just left our house and asked if we should wait for him. “No its ok it shouldn’t take too long”. I held onto Joseph’s cot to keep me upright, my legs were very heavy, I felt a little dizzy and like I had done ten rounds in a boxing ring. I wheeled him into a tiny room. I wasn’t sure whether I should sit or stand and I remember the bright artificial light hurt my eyes. Eventually I sat down as my legs kept buckling, feeling a little rude but not caring too much. I was happy and my only worry was whether Neil would know where we were.

From that moment on the questions began…“Does Joseph look like anyone?” “Yes” I grinned,” he looks like my dad” “Did your father have anything unusual about his ears?”“Err well he had a bit missing, it got bitten off when he was younger playing rugby?” (Where on earth was this going and why was she staring at me blankly?)“Ok Mrs Belton, I don’t believe in beating around the bush. I’m sorry but I believe your son may have Down syndrome.” The room literally began spinning and I remember her talking about a single line on his palms, something about a gap in his toes and that was about it. “If you would like to go back to your room someone will be along shortly to take his bloods for analysis” And that was it, a stony faced nurse wheeled us to room 13 and I shuffled behind.

She left wordless as I sat on the bed. Shell-shocked. I felt like someone had punched me in the face and stolen my baby. I needed Neil. I called him and he sounded very harassed and explained that he was walking through reception, downstairs. I explained I was in room 13 “please hurry, they think Joseph has Down syndrome”.

The following few days passed in a blur, there was no celebration and the midwives whilst not unkind struggled to answer my questions or even seem to know what to say. The one shining light in those few days was a domestic called Jackie. She would burst into my room, making me laugh by talking to Joe, she even nicknamed him “one eyed Joe” because he would never open both eyes at once. She treated me like a “normal” new mum and we would talk about Down syndrome, not medically like the other staff had but in real terms. I looked forward to seeing her every day.

Neil and I sat and talked. Joe’s diagnosis would change things but not us and not him. We hadn’t had any pre-natal tests because it hadn’t mattered then and it wouldn’t matter now. And so shortly before we were discharged his consultant came up and gave us his results. Joseph had trisomy 21 non-disjunction. We were given a leaflet for Sundowns (our local DS group) and we went home. Our life as a family of four began. With the bad memories of those awful few days after he was born disappearing, from the breastfeeding woman telling me I was determined he had Down syndrome and wouldn’t be able to feed, to the clichés of always being happy and loving, to the absence of my bounty photographs. I focused on the future and researched everything I could about his diagnosis and early interventions. We were happy and so well supported with our family and friends. Over 200 people attended his christening with everyone we knew letting us know that they were there and to them Joe is just Joe. Our lovely little son.

When Joe was 15 months old we had another surprise. This time around we were even more shocked. You hear stories of miracle babies after years of infertility but two on the bounce? Again everyone shared our joy. At 20 weeks we found out we were having a little girl. I was thrilled, a little sister for Eleanor. Again the pregnancy was pretty uneventful. We had decided not to test pre-natally. It made no difference to us, there was no decision to be made. But I could see the disapproval of many of the antenatal team. It was agreed I would have a growth scan at 28 weeks as Joe had been small. And it was then we knew our baby girl would also present us with a few challenges.

She had gone from being on the 50th centile at 20 weeks to the 10th. Over the next few weeks she went to the 5th then the 2nd then off the chart. When we asked for explanations we were offered “possible chromosomal abnormality” at the same time the genetic midwife told our midwife our chances of another baby with Down syndrome were incredibly rare. This lead to complete panic, I researched different chromosomal disorders with each one offering a bleak prognosis. In addition I had it hammered home that I was at high risk of having a still birth.

So at 35 weeks it was decided the baby was better out than in. On 17th June I went in for elective C-section 5 weeks early and I was terrified. The staff from the special care ward came to see me, reassuring me that Nancy had a bed waiting for her should she need it and they would be in theatre with us. But that didn’t reassure me. When asked what they could do to calm me down I answered “if there is anything you need to tell me, do it straight away with Neil.” The thought of making another phone call to my husband was unbearable so she promised she would. And that was it.

I felt calm and excited as we went into theatre. The atmosphere in that room was happy and relaxed as we joked with the anaesthetist, midwives and doctors. I lay thinking about the fact I was about to become a mum of 3, something I had never dared hope for.

Nancy Pearl came into the world screaming. At 5lb 1oz she was holding her own and wasn’t quite the 4lb baby we had been told to expect. Everyone congratulated us and the nurse told me she was beautiful and that she would just check her over to see whether she needed any additional support. The nurse returned to my side, “Maria she is gorgeous and absolutely perfect. I have had a look at her and she doesn’t need to come with us which is fantastic. I have noticed that she does have some physical characteristics of Down syndrome so I will come back when you are sorted with the doctor, is that ok?” Slightly shocked I nodded that it was fine. She squeezed my hand again and asked if I wanted to meet our beautiful daughter, “she’s got a shock of dark hair and is a good weight, well done and congratulations”. With that she was placed next to me and like her siblings before her I fell madly in love.

This time around there were no stoney faces and blank looks, the jubilant atmosphere remained the same. Lots of congratulating me and back slapping for Neil. It made me wonder if they had heard what she said. In recovery I learnt that they had indeed. Back on the ward the paediatrician visited us, again congratulating us on our beautiful daughter he confirmed that he too thought she had Down syndrome and they would come and take bloods to be tested. I also heard for the first time something I would hear again and again from that day to this, this was his first experience of siblings with trisomy 21.

I moved to my room later that night and pretty much from then until the time I came home I laughed with the staff. Not at my daughters diagnosis but about other things. Having a nurse for a mum (ensuring I complained very little because my leg was absolutely not falling off), the indignities of post-delivery and my need for decent coffee. The atmosphere in my room remained joyful and celebratory.

I am not going to insult anyone’s intelligence and pretend I was thrilled about Nancy’s diagnosis. To begin with it was hugely overwhelming. But this time I knew it wasn’t the end of the world. More importantly the staff didn’t think so either and treated me and Nancy like any other new mum and baby. And I received the Bounty package I had always dreamt of, no questions asked, no avoidance of my room. What a difference that made.

I continued to be supported by the community midwives at home. This time around was nothing like Joe. In many ways Nancy’s diagnosis was harder. Whilst we knew that Down syndrome was absolutely not in any way the worst thing our child could be diagnosed with, we worried about what this would mean for our family, for Eleanor. The staff at the hospital and at home listened to our worries. This time around we weren’t offered any clichéd platitudes or told not to worry until her test results came in. When they did arrive, the midwives rearranged their home visits to come and sit and listen to our concerns. But not once did they say that they were sorry. They simply listened and told us we could do it. And once the initial fears went and they did go very quickly, we could do it. Yes there are a few more appointments but our lives are filled with love and happiness. We are now part of an amazing community and both children have bought our families even closer together.

We had further genetic testing done to determine whether Nancy had non disjunction trisomy 21 like Joe. It didn’t matter to us but we wanted Eleanor to have all the information on her chances of having a baby with Down syndrome. A letter from the doctor talked on several occasions about the risk of her having a baby with Down syndrome. A risk implies a negative, a hazard and I can assure you my babies are neither. As it happens Eleanor has no greater chance of having a child with Down syndrome. Both children have T21 non disjunction. Their extra chromosome was just pure luck.

If I can give you one piece of advice, always remember that your words matter, your expressions matter. They will make the difference between a mother drowning or swimming. A mother being confident in her ability to parent her baby. If you let a parent think that their baby is a hazard, a risk, then you will terrify them. I was terrified once. The second time I was cushioned by support. I don’t need to tell you which one I better.

Today our life is wonderful and full of laughter with a teenager wanting to change the world, a peaceful and chilled little boy and a totally wild adventurous diva. After everything I can confidently say I absolutely wouldn’t change a thing. Be bold, be brave and be kind always💗💙