It’s Ziggy’s tenth birthday. Ten years since he was born too early, sleeping. It seems like the perfect time to tell his story. Happy birthday, my angel!
Mr G and I had been trying to conceive for two years and ten months, when on our fourth dose of Clomid, I got pregnant. We found out on 4th November, which is bizarre because Moo’s birthday is the 1st November and she’s a Scorpio, the significance of which we will come to.
My husband and I didn’t have any fertility issues, we just couldn’t conceive, or so we thought back then. The AMH test has since been developed and it turns out that I have no eggs, or an undetectable egg reserve to give it its official name. I shouldn’t have been able to get pregnant at all. So you can imagine how unbelievably happy we were when we found out we were expecting. The timing was a bit off because, back then, I was a wedding planner and our baby was due in early July, peak wedding season, but after so long waiting, I just didn’t care. I’ve wanted to be a mother my whole life, it’s the only thing I can honestly say that I have truly wanted. My career was just keeping me busy until then. That’s not to say, I would’ve given up work, I wouldn’t but I did plan to go part time. I’m rambling, back to Ziggy.
I had an ultrasound at 7 weeks at the Assisted Conception Unit (one of those scary internal ones!) to check the pregnancy was in the right place and how many babies there were. Luckily it was all good, we saw an established heartbeat and there was only one. Phew! The ACU told us this was great and that my chances of miscarrying had fallen from 25% to 2% as there was an established heartbeat and everything in the pregnancy looked good. They did point out that they couldn’t comment on the baby as it was so small at that stage.
My pregnancy was incredible. I wasn’t tired, I didn’t have morning sickness and, from the moment I found out that I was pregnant, I knew I was having a boy. Maternal instinct and all that. My family live in Italy so we spent Christmas with them and everyone was very excited about the baby. My twelve week scan was set for 4th January when I got back. We were very excited.
At the scan, they asked if we wanted to have a nuchal translucency test done. We agreed. From all the research that I had done during trying to conceive (I am very big into researching), I knew what a good nuchal should look like. When I looked at the screen, my blood ran cold. To my untrained eye, it looked too thick. I was right. After some confusion at the hospital to do with new malfunctioning computer software, we were told that the nuchal measurement was 3.7mm which meant our chances of him having Trisomy 21 or Down’s Syndrome went from 1 in 415 to 1 in 23. Needless to say, it terrified us. The scan also showed that the baby was bigger than we thought so my dates were recalculated and timing became an issue for the next step or test. We immediately made an appointment for a CVS. This was done within a couple of days and the results came back the next week. Our baby was chromosomally fine. No irregularities at all. It also confirmed what I already knew, we were having a boy. So now we looked forward to our 21 week scan. We knew that a high nuchal translucency test could also be because of cardiac problems but we knew that the risks were small (they tend to occur when the measurement is over 4.0mm) and I wasn’t worried when we went in.
We had chosen our son’s name by then. I started to feel movements by 15 and a half weeks which I knew was really early for a first pregnancy but, apparently, that can happen if you are thin. (I’d spent the six months before getting pregnant losing a stone with Slimming World and was looking pretty hot at the time. Ironic as I was about to expand rapidly in pregnancy. Isn’t that just the Murphy’s?) Feeling him kick just confirmed to me that he was a big, active baby. My stomach was very tight and quite big. It made me quite uncomfortable and was the first thing that I asked about when I went into the 21 week scan but our doctor said it could just be from the way I was carrying him. It wasn’t. I lay down for the scan. Mr G and I spent a few minutes laughing as Ziggy made his presence felt by moving all the time and flashing his boy bits at us! It still brings a smile to my face now, thinking about it. It was really funny, legs akimbo, letting it all hang out. But those were our moments of innocence and joy, both shattered so quickly.
“I’ve seen some things that concern me. I need to have a closer look and so will be taking my time focussing on them.”
Simple words, individually innocent. Group them together and they will haunt me for the rest of my life. Our world crumbled and our happiness just disintegrated around us in that moment. Gently, she showed us what she had found. First there was Ziggy’s cleft lip and palate, easily cured with operations, no doubt. Then, there were the missing fibulae in his calves, so he might need help walking. We could deal with that. His rib cage was smaller than it should be but not so detrimental as to affect he development of his lungs. I was carrying more amniotic fluid than I should, hence the tight belly (oh, that lovely polyhydramnios), but we could see a small pocket of fluid in his stomach so he was taking some in.
“But what I am most concerned about is the fluid on his brain, the ventriculomegaly.”
I can barely spell the word, never mind pronounce it. We looked at her blankly. She explained about the right and left ventricles in your brain and how they have fluid in them. Normal at 21 weeks pregnancy is a range of 6mm to 10mm. Ziggy’s were measuring 14mm on both sides although she said that she had seen them measuring as high as 16mm in some babies. That’s a 2mm difference of very bad. What did this mean for our baby boy? She started talking of developmental delays but I didn’t really understand the seriousness. I kept thinking that developmental delays meant learning difficulties. My father is very dyslexic but had had a very successful career despite this. What is it about shock that makes you so stupid? She left the room to go and find a geneticist for us as she suspected that it was a genetic syndrome that Ziggy had. When she went, I looked at Mr G and burst into tears. The thought that something was wrong with our baby was unbearable but I still hadn’t registered how serious it really was. Well, not until she came back and told us that we had an appointment later that day with the geneticist. “Thank you,” I said.
“It’s at this point that I wouldn’t be doing my job if I didn’t mention that one thing you should be considering is whether or not to continue with this pregnancy.” Those words, those words.
Friday, 25th February 2005, the day that I learnt was sorrow really is. Mr G and I went to get some lunch. I don’t know how we managed to eat. Then back to the hospital to talk to the geneticist, who so lovely and compassionate. We were so lucky, we had the best care we could have asked for. Slowly, she explained to us that individually these issues were not so bad, except the fluid on the brain. She told us that developmental delay used to be referred to as mental retardation and admitted that she was not allowed to use that terminology. She only said it as she could see that I did not understand what I was being told. She said that as Ziggy was presenting with all of these things at once, it pointed to a genetic syndrome but not one that she knew of. She had done some research and the only one that was similar was based on just one case study and the condition had proved fatal. She didn’t want to give Ziggy the same prognosis as it was only one study. She did say that, if he survived, he would probably be mentally and physically disabled. She said there was nothing they could do until he was born, if he survived, and even then, there may not be anything they can do except operate on his lip. The only decision we had to make at this point was whether to continue with the pregnancy.
I couldn’t begin to understand how this was happening. This was not supposed to be. Mr G and I had waited too long for our baby as it was, why was this happening to our precious Ziggy? I was seriously shocked. The shock wore off as soon as we exited the lift in the lobby and walked straight into a young couple carrying a car seat with a newborn in it. I think I took four steps before completely collapsing.
That weekend went by in a haze. I didn’t want to speak to anyone except our dear friends who had lost their first son due to Group B Strep. Upon my phone call, they dropped everything, drove the hour and a half over to London, dropped their son off to the grandparents and came over on the Saturday night and talked to us about what it is to say goodbye to your baby. They talked about how much they loved him although they had never seen him alive, he died at the moment of birth. They talked about his funeral, about how they remembered him and they talked to us about Ziggy and the decision we were faced with. I cried a lot that weekend. I didn’t know that I had so many tears. Of course, now I know that they don’t stop for very long.
I think if I had loved him a little less and been a little bit more selfish, there would have been no choice. I would have kept him, no question. But I loved our son from the moment we had made him. Sometimes, I feel I’ve loved him my whole life. Until that point, nobody had brought me so much joy and happiness as that baby. He taught me how to love unconditionally. And all I could think of was him. Would he feel pain? How much would he suffer? What kind of life, if any, would he have? Would there be any quality at all? I know he would have brought us so much joy and we would have loved him more because of his imperfections (just as I love his sister), but how would he be treated by the world outside? How would he feel emotionally? And that was if he survived. There was a more significant chance that he would die in utero, slowly. Would that be painful for him?
I prayed a lot that weekend. I looked inwards and I sought reassurances that no one could give me. In the end, I listened to my instinct. The same instinct that had told me Ziggy was boy was telling me that he would never live. He would die, either in utero or very soon after birth. I knew it in my heart.
So in the end, the only choice I had was how would my son die? I chose the one that would spare Ziggy the pain and suffering. We went to the hospital again on the Monday, had a second opinion which confirmed the first, signed that dreadful piece of paper and took the tablet that started the whole process off. There is so much about this that haunts me but signing a piece of paper that said ‘termination’ and ‘feticide’ nearly killed me. We had been advised that it would be better for Ziggy to have an injection to stop his heart before birth as the trauma of birth would probably kill him or he would die soon after birth. At this point, I was willing to do anything that made it easier for him. The tears never stopped, which was probably very distressing for the doctors and midwives. They kept asking me if I was sure. Well, what can I say? No, I did not want to do it, every fibre in my being screamed ‘no’, but I had to, for the sake of my baby. I loved him too much.
Wednesday, 2nd March 2005: definitely a day of two halves. First half was at the one hospital, having that dreadful needle inserted into my stomach through to his foot to sedate him and then stop his heart. Letting my darling, beloved, much wanted son slip away from us at 10.25am. So much sobbing, so many tears, so much heartbreak. Waiting around for half an hour until they can scan again and see that it has worked.
The second half was so amazing, so wonderful. We drove to another hospital for delivery. I had a pessary at 4pm after waiting around for a while. Everyone said it will take 18 to 24 hours but again, my fabulous instinct said no, it’s going to be quick. I told the doctors and midwives that it would be quicker, they guffawed at me. Active labour was established at 7pm without any other medication and they were all eating their words. They broke my waters and he was delivered at 11.55pm. We had the very best midwife in the world to deliver our angel. She cleaned him up before we saw him. When I asked what he looked like, she replied that he was beautiful and he was. I could see his father’s eyes, my ears, my hands and feet. Even his cleft lip was just perfect. He was and is our gorgeous little boy. I know I made the right choice for him, if not me.
Both hospitals deserved medals in my opinion. The people we met and who looked after us made what was, in reality, a nightmare into a beautiful dream. (Although that could be in part due to the gas and air and morphine that they had me on.) There was Celtic music playing in the background. Everyone used his name or called him our son. They were so sensitive and compassionate. There are no words to describe my gratitude to them. We got some sleep and then spent the whole of the next morning with him, cuddling him, talking to him, singing to him. Most of the time, we cried but it was the most special morning of my life and I am so grateful that we have that memory to hold onto. Ziggy was blessed by the hospital chaplain with a beautiful little ceremony. Then at 1.30pm, I realised that if I didn’t leave him then, I never would. So we left. Walking away from him was the hardest thing I have ever done.
I still have his neonatal blanket that he was wrapped in and his teddy. They lie between Mr G’s and my pillows as they have done every day of the last ten years. I cuddle them in my sleep sometimes. We have so many photos but nothing will bring him back. Every year from 25 February to 2 March, my arms ache and my heart hurts and that is okay with me. I miss him. I miss carrying him, feeling his little kicks. Turns out that he loved a bit of 50 Cent singing “In Da Club”. I miss holding him in my arms and smelling him. I miss holding his tiny hands in mine or kissing his little chubby cheeks. I have the memory of one precious morning to comfort me for the rest of my life. I have no problem with letting myself grieve for five days a year for the boy I lost and miss every day of my life. There are 365 days a year, I can afford to spend five thinking about and remembering the most beautiful boy to ever grace my life.
His funeral was on 29th March and it was soon after that that I found out that I have OS-CS. My variant is lethal, more so in boys with their one solitary X chromosome. It should have killed Moo at birth and Ziggy definitely would not have survived. The severe polyhydramnios that put me in premature labour with Moo didn’t start until 27 weeks. It was already present at 21 weeks with Ziggy.
We had him buried at our local cemetery. In his casket, he has his teddy, the same that we cuddle, some photos of us and a letter from each of his parents. I would like to share mine with you.
My dearest, darling son
How can I put into words everything you mean to me? You are all my dreams come true. You are mine and Daddy’s precious gift from God. We just didn’t know how soon we would have to return you to Him and let you go. I had so many dreams for you. I dreamt of the first time you smiled at me, the first time you laughed, the first time you walked, talked, went to school. I dreamt of watching you fall in love, maybe even get your heart broken. All those things that make up life, but they were not meant to be.
But you are my beautiful baby boy and now I must dream different things for you. So I dream of you running free in the heavens, playing with the other angels. I dream of love and laughter, a life of no pain and suffering. I dream of you watching us and seeing how much we love and miss you and wish you were still here, even thought I know how selfish that would be. I dream of you coming to visit us in our dreams, of your smiling, sunny face. I so hope to feel the whisper of your angelic touch on my face, heart, shoulder. Mostly, I dream of the day I will see you again, and although I do not run to it, the idea of it makes me smile. I can’t wait to sweep you up in to my arms and kiss your face a thousand times and more.
Until that day my darling, I will say, good night, sleep tight and don’t let the bed bugs bite! Play and run and have life of fun, love and laughter.
Until the day I hold you again,
I love you.
And do you know what? A week after his funeral, I had a dream. I was in the funeral home, walking towards Ziggy’s coffin. I was utterly devastated and sobbing when there was a sudden, very bright flash of light. When I could see again, the room had changed into a baby’s nursery. The coffin was a cot with a giggling, wriggling baby covered by a blanket. With some trepidation, I walked up to the cot and lifted the blanket and there was Ziggy, smiling at me. His cleft was gone and he was so incredibly happy. I woke up sobbing but so comforted. Coincidence? I think not. That was the only dream I have ever had of him too.
Oh, and the Scorpio thing? Some close friends bought me a star and named it after Ziggy. They bought it in March 2005. Moo was born in November 2007, a month early. Guess where Ziggy’s star is. That’s right. It’s in the constellation of Scorpio.
And Moo’s birthday is 1 November, All Saints’ Day. In Mexico, they believe that all the children that have died come through the gates of Heaven at midnight on Halloween and spend the day with their loved ones, only to return at midnight when all the adults come down for the Day of the Dead on 2 November. This means that they believe that the day my daughter was fighting for her life and proving to be an absolute miracle, her big brother was with her, keeping her company. Pretty damn cool, if you ask me. The doctors still do not know how Moo survived. Medically, it should have been impossible. It seems like she had her own guardian angel that day . . .
I love my son, I love my daughter, I love my children. They are my little miracles.