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Guest Post by Helen
I was six months pregnant when my dear friend’s baby boy was stillborn. I remember clearly the moment my husband told me the news. I remember crying for her and for him, putting my head in my hands and saying those famous last words, “If that happened to us, I don’t know how I would go on… I would just want to die.”
But we didn’t go home; we went to the Special Care Baby Unit. And Aidan wasn’t put in his car seat; he was put in an incubator.
Three months later, I lay in a hospital bed holding my own, newly-born son, and I cried. I cried with sorrow for my friend and her son, with gratitude for the beautiful boy in my arms, and with relief that my son was healthy and alive. I have never felt as lucky as I did that day. We named our son Aidan Christopher. Aidan means “fiery little star”. We didn’t know it, but it was the perfect name for a little boy who would go up to the heavens and light up the sky with love.
When Aidan was 32 hours old, a doctor noticed he had a small irregular movement in one of his legs. She thought he was having slight seizures due to an infection. Our bags were packed, the car seat was in the car, and my husband had arrived to take his wife and his son home. But we didn’t go home; we went to the Special Care Baby Unit. And Aidan wasn’t put in his car seat; he was put in an incubator. We were told he would be given antibiotics, and that we could take him home in the morning. I cried every minute of every hour, holding my son’s tiny hand through the opening in the incubator – clinging on to the hope that he would come home.
We cradled our baby boy in our arms, and told him not to be afraid. We told him how loved he was, and we promised that we would make him proud. He lived for one hour after his machines were turned off, and they measured his short life in hours instead of days – Fifty Nine.
The following day, when he was 48 hours old, Aidan was diagnosed with Ornithine Transcarbamylase (OTC) Deficiency, a Urea Cycle Disorder which is so rare that it only affects 1 in every 80,000 people. Inside his tiny body, ammonia was being made as part of the natural process that breaks down proteins. Aidan was missing an enzyme, which meant that his body wasn’t able to turn the ammonia his body produced into urine. Ammonia is highly toxic, and with every second that he lived, his body was being poisoned and his brain was being damaged. We were told that he needed to go to a specialist hospital for dialysis and that he may need a liver transplant. He was transferred into a portable incubator and everything was ready for him to be taken in the ambulance.
And then his heart stopped. It did start again, but he had over forty times the normal level of ammonia in his body, and had suffered so much brain damage as a result, that the outcome was inevitable – our son was going to die.
We cradled our baby boy in our arms, and told him not to be afraid. We told him how loved he was, and we promised that we would make him proud. He lived for one hour after his machines were turned off, and they measured his short life in hours instead of days – Fifty Nine.
Since saying those famous last words, that I thought I would die if I lost my baby, I have often thought about why I haven’t just dropped dead. Isn’t it possible to die from a broken heart? It was shock that numbed me enough to face Aidan’s funeral and the empty weeks and months that followed. But slowly, the reality of my new life began to sink in. And I have often wondered what has kept me from staying curled up in a ball and has made me get out of bed and face each new day through the heartache. To put it brutally, what is it that has kept me from wanting to die? For what reason am I still living, still breathing, still standing?
Simply, it’s because of my son. My beautiful, brave little boy. Aidan helped me to understand the depth and the enormity of love. He showed me how to be brave, even when things are uncertain and you are almost petrified with fear. He taught me about the true value of friends and family who gather you up in love when your world has ended and about the reality of people who disappear when the going gets rough. His strength and courage has inspired me, and made me realise that I am stronger than I ever knew I was, stronger than I wish I had reason to be.
I have days where I wake up and desperately want to crawl back under the duvet and ignore the world. But instead, I put one foot in front of the other and slowly make it through each day. Because I have a son. I can’t see him, or touch him, but he is in every single step I take. And I want to make him as proud of me as I am of him.
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About Helen
What a beautiful little boy and what a heart breaking story. I too live for my son. Every time I think there’s no point anymore, he tells me I’m supposed to keep living. Wishing you peace and love.
Thank you Jessica. That’s exactly it – whenever things get too rough, you remember that you have to keep going for your little one. Hugs xxx
Beautiful, beautiful post.
Thank you Ashley xxx
Yes! We have to live on for our children, be their voice in this world. If I gave up on living the life I’ve been preciously given it would be like spitting in the face of my children that have gone before me. I know they are with me every day and I live to make them proud.
That’s exactly it Stephanie! xxx
So proud of you Helen, for speaking out about babyloss, and for bringing beautiful Aidan into this world. Beautiful post, you do him proud. Love you loads, Amy xxx
Love you too Amy, you have been such a source of strength, willing me on through good days and bad. I wouldn’t be still standing without you xxx
Now I’m crying at work Helen! ((hugs)) xxx
Helen I am so sorry about your son Aiden and admire how you have been able to find inspiration in your love for him to carry on. I wanted to echo your words about the lesson you learned about the true value of friendship and love. At a time when you needed people the most, you found that many disappeared. I had a similar experience when my granddaughter passed away shortly after her birth. People that I thought cared, even family members seemed to distance themselves from me. I think many have experienced this sad reality and it makes getting up and living each day more difficult. I have decided that I will only surround myself with those that have been supportive, that don’t cringe when I say her beautiful name or mention how much I miss her. It must have been extra shocking for you when you thanked God for a healthy baby months after your friend’s son was stillborn. I hope the two of you have become closer because of the tragic bond you share. Thank you for sharing Aiden’s story. God Bless you.
Thank you Colleen, I’m so sorry to hear about your precious grandaughter…
I know exactly what you mean: “I have decided that I will only surround myself with those that have been supportive, that don’t cringe when I say her beautiful name or mention how much I miss her.” I’ve done exactly the same. So many people have disappeared, some people who we believed would be supportive were infact the ones who were quick to turn their backs on us. We have had some truly awful things said to us, by people we believed would treat us with love and compassion. Bur I know how precious time is now, and I only give mine to the people who support me and who speak of my son with love and respect. Hugs to you xxx
Beautifully written, hugs to you and your angel…thanks for sharing your story…
Thankyou Meg xxx
You said exactly what I’ve been feeling. As I lost one twin (at 20 weeks), I wasn’t able to grief for him and every day I woke up in the hosiptal bed I pray for his sister to stay inside a little longer counting week by week and I asked him to watch over his sister. When she showed up (at 23 weeks) I prayed for her to fight and tell her how proud we where of her she as doing so good, there we nights when I left the hosiptal that I felt like I couldn’t go on and I said if she was fighting then I needed to fight. She was doing great, impressing the doctors and when the phone rang to wake me and gave me bad news that she was having trouble breathing and they were having a hard time keeping her heart rate us, I really thought then that I too would die from a broken heart and everyday it’s been like that. I see the same thing in my husbands eyes we’ve lost our drive, his hands and feet broke out in hives that we are convinced is due to him being so sad. Most days the only thing that keep me going is because I know they are not sad where they are and I know in my heart that they don’t want us to be sad for them because whereever they are even though they are without us, they are happy. Thanks again Helen for sharing.
I’m so very sorry to hear about your precious twins.. Keep fighting, your beautiful babies will give you the strength you need. Sending you hugs. xxx
Helen — Thank you for sharing your story. I am so sorry for your loss. Aidan is absolutely beautiful. When I was just 4 months pregnant, I too had a friend whose baby was stillborn. I was in shock — she was so young and healthy. I remember telling my husband about her that night, and we talked about how lucky we were that our baby was healthy, and how there’s no way we could survive if our baby was stillborn. I even somehow felt “safe”, because I thought there was no way both of our babies could die in the same year… what are the odds? I naively thought. Well, just 1 month later, I had an ultrasound which discovered that our baby had a fatal condition and would not survive. It’s now been 2 1/2 months since he was stillborn and like you, I have found strength and inspiration in the life of my son. He gets me through every day. Thank you again for your beautiful and touching words!
Thank you for your lovely words, Catherine. I am so sorry for the loss of your little boy. xx
Thanx.
I really needed to hear that. When I gave birth to my preemi son at 25 weeks, I was scared but the moment I saw him in that incubator and fighting for his life I knew, I had to be strong for him. Lucky enough he only survived three days and I too felt how it’s like to be a mother to a son. This article was what I needed. God Bless you.
Thank you Magdeline
I am so sorry for the loss of your little boy.. xx
Helen, thank you for writing such a heart breaking, yet inspiring story. Aidan is a beautiful baby. I am so sorry for your loss.
Gale
Thank you Gale xx