All babies are miracles, even the ones who aren't

I get so tired of reading the stories of miracle babies. I mean, each and every baby is a miracle, from the moment of conception onwards, and when a baby survives against the odds, that is indeed a wonderful, wonderful thing. But the media, at least in this part of the world, seems obsessed with their stories. There seems to be a new one in the paper or on the news each day. And despite the fact these stories provide boundless hope and warm the heart, they also get me down.

I know why these stories are so prominent, and it because they have happy endings. And everyone loves a feel good tale. Just this week there was a story about a baby born without a pancreas, and the final line of the story went something along the lines of "she is only here because of the sheer determination of her mother". And that just makes me mad. Because I was determined as hell to get Hope here, and did all the right things for 40 plus weeks, and she's not here. And she had a pancreas. And all the other bits and pieces she needed in order for a long, happy and healthy life.

Today, there was a story of a miracle 24-weeker who spent months and months in the NICU and has thankfully just gone home with a clean bill of health. And naturally, the parents are relieved, as I'm sure they had many touch and go moments. And I am thrilled for them. I really am. They came so close to living this life. At times maybe they never appreciated just how close.

Then again, in the same paper, a woman who miraculously was able to save her seven month old son when she went in to his room at exactly the right moment to check on him during a nap. He had stopped breathing, and she got there quick enough to make sure his life could be saved. She normally didn't check on him during lunch time naps, but on this day, she did. A miracle, indeed. And now of course she is counting her blessings. And so am I. This club does not need more members. The pain of losing a healthy seven month old I'm sure would pretty much destroy a parent.

And the other night on the news, the other type of story that tugs at my heart strings and that is the one that sparks "community outrage". It was about a woman who had been sent home from hospital in early labour (just like I was) because there were no beds for her available. I'm not sure if there were beds available for me the night I went in to hospital, but it was "hospital policy" to send me home because I wasn't 4cm dilated. This poor woman had to travel home in a taxi and when she got there, she delivered her daughter inside her house. But the baby is fine. She wasn't breathing at birth, but she survived. A miracle. But people are of course still outraged, and rightly so. Because they can imagine just how bad things could have been. THINGS WERE THAT BAD FOR ME. I was sent home. And she died. I was "lucky" in that I got to go back to hospital to give birth, but we knew the outcome wasn't going to be what we had planned. We knew it was going to be catastrophic, devastating and heartbreaking. Because it was all too late. They sent me home from hospital BUT she died. She wasn't a miracle or a survivor. So my story isn't told therefore the community can't be outraged. I have to suffer in silence. Or just blog out my rage.

So where are the stories of the babies who didn't quite make it? The babies who did slip away silently from SIDS because Mum didn't go and check on them during a nap, despite the fact she normally did? The 27-weeker who didn't make it out of the NICU? The 41 week baby who beat all the odds to DIE inside a healthy mother at the end of a healthy pregnancy? Where are those stories? Why aren't they being told? Why are so many of us being kept in the dark to this ugly, secret side of parenthood?

Each one of these stories on the miracle/survivor babies has a common theme: "it is every parent's worst nightmare". And while I can only imagine what I nightmare it is to see your child sick, suffering and desperately clinging to life, as I speak to many who have had to travel this hellish road, the nightmare only seems to get worse once they are actually gone. Once you can't fight for them anymore, or watch them cling to life. Even if they were suffering, or in pain. Even if they are now at peace. Once they are gone, they are gone forever and the hole left in our hearts will never heal. The hole and the ache will remain as long as they are gone, and beyond. We will always wish for one more moment to hold them close, feel them, smell them, feed them, watch them smile, watch them grow and tell them we love them. And when they're finally gone, we can't. That is, in my opinion, when the real nightmare begins - living the rest of your life without them. Having to plan their funeral. And I suppose that comes from the fact that Hope did die in utero. That I never got a chance to fight for her. That I never got a chance to see her fight. To see her grit and determination. That she was gone before we were both given a chance.

I used to be a journalist, and I still have many contacts in the job. I have been trying tirelessly to get a story up on our babies, and the fact that things don't always go well. That nine months doesn't always end in happily ever after. But I often come up against brick walls. "Too taboo". "We don't want to scare parents." "We need there to be closure, or a happy ending." But that's the thing, there is no silver lining when a baby dies. Even if another one follows, the pain from losing the one who came before does not go away. And why does baby death have to be taboo? All sorts of other deaths are reported in the media every day. Road accident deaths, murders, skin cancer victims and the list is endless really.

In this country alone, six babies a day are stillborn. One in 140 pregnancies ends in a stillbirth. Ten times more babies are stillborn than die of SIDS. There are almost as many stillborn babies as there are breast cancer victims each year. But why did I only learn about these tragic stats after the fact? Why didn't I know this before I entered the pregnancy? Why aren't more people outraged about this? Why isn't more being done?

I want more people to know about the real risks. I want more people to know that despite being young, fit and healthy and having an easy pregnancy, it does not mean your baby will come home with you. Yes it will scare parents, but if scaring them can provide them with one small sliver of information that can get their baby over the line, and home from hospital, then that is a good thing. I would love to know that Hope's story saved one baby's life. I would love that.

I really do believe, that if I knew part of what I know now, Hope would be here. Would I have listened to that stuff or really heard the message when I was living in the happy bubble of her pregnancy? Hard to say, but if more stories were written about the "taboo" subject, maybe the message would eventually get across. This happened with SIDS 20 years ago, and as a result, far less babies now lose their lives in this tragic way. The death rate from stillbirth has remained unchanged for years. It needs to change. We need to change it.

For this pregnancy, I am being monitored far more closely than I was last time. There will be more scans and frequent monitoring in the final weeks. With Hope, there wasn't any. Just the two ultrasounds, then 30 mins on the fetal heart monitor at 40 weeks and 1 day when I went in to labour (the day I was sent home from hospital). That was it. Now, they will be doing everything they can to prevent the same tragic outcome, even though there is no increased risk of that happening again. I go in with the same odds as last time. And that isn't all that comforting, really. I beat the odds once before. Some days it is hard to believe that I wont again.

So why wasn't more done in my last pregnancy? Why wasn't everything done to keep Hope alive and ensure she came home with us? Why isn't every pregnancy treated as high risk, when it is a fact any pregnancy can end up "high risk" in a flash? I just feel as if the hospital's stance is "whoops, sorry we couldn't keep the first alive, we'll definitely make sure we try much harder this time". It isn't enough. All babies deserve this high level of care. All pregnant mothers need to know their caregivers are doing everything they can at every possible opportunity. There is no place for complacency in obstetrics and midwifery. Obstetricians and midwifes should always err on the side of caution. If this had happened with Hope, again I KNOW she would be here. She really would.

While today I feel happy for the parents of the latest miracle baby stories, I just feel sad for me. For us. As much as Hope was our miracle, and I feel blessed I got to carry her as long as I did, I just wish she could have ended up as a miracle baby story in the paper. And because she can't I want her story told anyway, as our miracle baby who tragically got away......