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This week is baby loss awareness week and we wanted to recognise this for any followers of the blog who have been devastated by the loss of a baby or child.

Back in May I had the pleasure of meeting comedic compere and vocalist Kiki Deville. She has a powerful story of life beyond death after losing her baby son to a rare genetic condition back in 2007. Ten years on and Kiki has agreed to share with us her story as well as some top tips, and advice with a hope to help anyone going through miscarriage, still birth, or child loss. Or maybe you know someone currently going through it, and need some help with how to deal with it.

 

Kiki: On September 12, 2007, my husband Chris and I were in hospital getting ready to welcome our first son together in to the world. A year earlier we had suffered from a very rare Molar Pregnancy, and throughout this pregnancy we were told that our child may have a genetic condition but that it wouldn’t be anything too serious, in the opinion of the consultants and our hospital assigned geneticist. When Dexter William Robinson was born at 6pm that day, I held him and we thanked the universe for this perfect looking baby boy. Within the next 24 hours, our lives changed forever.

Dexter had needed resuscitation at birth, and as I held him in front of me, I had an overwhelming sense that something wasn’t quite right. After a harrowing night of trying to feed him and him not making a sound, the next morning, he was moved to the Special Care Baby Unit. Next thing we knew, our geneticist was taking my husband and I, and his parents in to a small room to talk to us. Dexter had a very rare genetic condition called Zellweger Syndrome. He would be expected to live for less than six months, although in the geneticists opinion, it would more likely only be a few months. To this day, I still feel the most debilitating sense of shame and guilt that my son, this helpless baby had been given a genetic condition and that I had not been able to bring him in to the world healthy and able to live a full and pain free, happy life. As irrational as that sounds, any mother can understand the sense of responsibility that you have for your child. There was literally nothing we could do but wait for him to die.

Zellweger Syndrome is an Autosomal Recessive Disorder Peroxisomal Biogenesis Disorder. This means that both my husband and I carry the gene, as do both of our sets of parents, and so on, and we have a 1 in 4 chance of any child that we have suffering from the disease. Peroxisomal Disorders are a fundamental cellular level so they are terminal in many cases. Zellweger Syndrome is on a spectrum of diseases on the Zellweger Spectrum. There are some diseases that will enable a child to live a few years, and other that enable a child to grow in to an adult with the right treatment. But Dexter had the very worst kind. The kind that meant that he was unable to process and break down Long Chain Fatty Acids in his body. These toxins then eat away at the Myelin in the brain and death ensues. We decided very quickly that we did not want to intervene in Dexter’s death, rather we wanted to take him home and manage his symptoms. He had many seizures a day, he couldn’t suck or swallow so he had to be fed by Nasal Gastric tube, and he had no muscle tone, so he was essentially unable to cry (that’s right, those little screaming baba’s have some serious good tummy muscles)! A week later, and referred to Derian House Children’s Hospice, we took our little man home. We tried to fit in a lifetime worth of love in to the time we had him. We held him as much as we could (although I always feel we never held him enough), we took him places and we soothed him through terrible seizures and bathed and massaged him every night he was alive. On October 12 we held a 1 month birthday party for him, and all of our friends and family came to meet him. He was getting sicker by this time. 3 days later, on October 15, in our arms, he took his last breath, at Derian House.

LJ: What got you through that time?

Kiki: Kindness. Our family and friends. And adrenaline. Our family unit is very tight. My Sister in Law was Best Woman at our wedding and one of my best friends and she had just had our Niece Lilli who had been born in the July. She lives in Norway but she rushed home for Dexter’s birthday party and called every day. My Mother and Father in Law were incredible. Coming from Australia and having none of my own family here in England made it all the more difficult for me, but my friends were unbelievable. Without them, I don’t know how i would have gotten through the time. My husband and I were rocks for each other and without him. I wouldn’t have survived.

LJ: What tips would you give to anyone going through a similar situation today?

Kiki: 1) Talk about it.

No matter how uncomfortable someone looks or says they are, TALK ABOUT IT. If someone feels uncomfortable, ask them to take that level of discomfort, times it by a million, and they will have a half a percentage of what you will feel daily for the rest of your life. The death of a child is one of the worst pains you can imagine.

2) Also, don’t allow anyone dictate to you how your grief should go.

There are the parts of it you will go through, denial, bargaining, all of that stuff, but there is no time limit. There is also no rule about how long you’re allowed to grieve for a baby. Miscarriage, Stillborn or Infant death, that baby is your child. “At least you can have another. At least he was just a baby, at least you can get pregnant” NONE of these phrases are things that should be said to a grieving family. There is no “at least.”

3) If your child has an illness, be the expert.

Especially if its a rare illness. Medical professionals are amazing, but they cant know everything about every rare illness. For many of the doctors who saw Dexter, they had never seen a child with Zellweger’s before. You are your child’s advocate. Be the expert and never be afraid to be vocal and demanding about their treatment.

LJ: What is life like for you and your family now?

Kiki: I am in awe at how blessed I am daily. We have a beautiful, healthy son, Arlo Dexter, who is 9 and the most wonderful personality who makes me thankful every day. I also have my older children in Australia, Alec who is 26 and Paris who is 21. All of them make life worth living. Over the past 5 or so years I have moved more in to musical comedy, having been involved for about 8 years in the Burlesque and Cabaret world, I now travel the world as a singing, comedic Compere, and I absolutely love it. I am surrounded by friends in my career, and at home, who make my life a joy. I pinch myself daily that I have such wonder in my life. I will never stop being grateful. Music and Comedy are my escape and also one way that I use to grow my platform in order to help people talk about death and grief, and help move some of the taboo around it.

One of the reasons that I auditioned for The Voice UK in 2013 was in order to be able to help raise awareness and gain some better profile to talk about Children’s hospices and how necessary, yet grossly underfunded they are. Children’s hospices receive roughly 7% of their running costs from the government. They are an essential service for families and people need to know they are there.There are times that are truly hard. Dexter’s death and life changed me profoundly. In good and bad ways. I struggled for a long time to talk to people about my feelings. I could talk in matter of fact ways about things, but I struggled to be vulnerable. I have overcome that and know that I have to reach out when times are tough. After all, there’s no point in having all the wonderful friends I do if I don’t tell them when things are tough! This year, he would have been 10. A whole decade has passed since we had, and then lost, him. And yet it feels like yesterday. It is so very true that you never get over losing a child, you just learn to live with it, as best you can.

LJ: Are there any particular resources that helped you that you can pass on to others reading today?

Kiki: We were so very fortunate to be referred to a children’s hospice. Derian House holds a very special place in our hearts and we have spent a great deal of time trying to raise both money and their profile over the last 10 years. Facebook was relatively new when we had Dexter, but I now rely heavily on support that I get online in groups of parents who have been through similar things. Counselling was a great help to me too. It helped me work through some of the feelings of blame that I felt, and helped me understand how and why I had changed in the ways that I had. Probably, most importantly, remember that its ok to laugh. Don’t feel guilty. Seek out things that make you happy and that make you feel joy. You’d be amazed at the amount of stand up comedians who have lost children (Ronnie Corbett, Charlie Chaplin, Lou Costello of Abbott and Costello). There is something about comedy after such intense darkness that seems to help. It really is the best medicine.

LJ: Thank you to Kiki for being so open with us here on the blog. For me personally, this story is a reminder to take each day as a blessing remembering to practise gratitude and humility. Life is so precious.

If you feel this blog could help someone today, please share, lets help each other.

Love Lily-Jo x

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