A few months ago a woman reached out to me through facebook. She was pregnant and the 20 week scans had revealed real problems with the baby.
I won’t give too many details, because this isn’t my story to tell, it’s her’s and her family’s. But I will say she was wondering whether to proceed with the pregnancy. Doctors had said a termination was an option and it seemed like they were encouraging that line of thought. The baby’s future had a question mark over it, not just for whether special needs was going to be a title she fell under, but because the viability of the baby’s life was in question. The conditions and issues they could see in utero could be life threatening and potentially painful. She wanted to talk to me about my experiences. She wanted advice.
I remember being so affected by this. I struggled with how to reply. I was instantly in her shoes, pregnant again with Eva, and all the worry and uncertainty. But there was a difference, I had never been offered that choice of termination because Eva’s condition looked good for the most part, and now, looking back the decisions and choices I would make are undoubtedly and inescapably coloured by the fact that I knew and loved Eva.
If I had known all her issues when she was still in utero, what would I have done? If I knew what I know now, and could go back, what would I have done? Is it different? Most definitely, yes it is different.
I wanted to tell her what I would do. I wanted to tell her that what I would have done when I was pregnant may not have been the same thing I would do if given that choice now. I wanted to tell her that doctors get it wrong sometimes, that antenatal scans are so often misleading. I wanted to tell her that after Eva was born a doctor said to me that in utero scans are like “trying to x-ray someone in a swimming pool” and how angry I had been at the certainty they had seemed to provide at the time. I wanted to tell her that those brain scan results don’t mean anything really, that no one can know what the affect of those missing pieces will mean. I wanted to tell her that no matter what the scans said, she would love her child.
But then, I didn’t want to give her false hope. While Eva’s scans turned out to be not as bad as first thought, there is always the possibility that they would have been worse. I can’t guarantee that doctors are just giving her the worst case scenario, when in fact it could be the exact scenario they face. I don’t want to be the person who says, “I know a baby with x condition, and he’s doing fine” because I know when people said it to me I felt so angry, because not everyone gets to be that success story.
I felt roiled up and sick for this woman, having to make these decisions. I knew what I felt so sick about was that I couldn’t say those things to her, anymore than I could say them to myself when I was pregnant. I couldn’t advise myself and even if I could have, I don’t think I would have listened.All I could say to her is what someone said to me, and that was that whatever decision she made would be the right one.
They kept the pregnancy.
I heard recently that the baby was born. Her health conditions were worse than anticipated. She had 20 short days with her parents, some of them at home – thankfully, and then she died.
Her parents had three weeks of worry and exhaustion and doctors. But they also had three weeks with their daughter.
I don’t know what the answer is here. It seems so cruel and brutal. The mother admitted that people had commented to her while she was still pregnant that she should have had a termination. They looked at her baby and pregnancy as unnecessary, as a suck on tax money, as cruel. But had she gone through with a termination, she would have received hate on the other side of the equation too.
There’s this binary in the special needs parenting world that I find so frustrating. People who choose to have their baby after finding out they have Down Syndrome while they are pregnant are sometimes told, “well you had the choice, this is all on you now, why should you get any extra help?” But if, heaven forbid, you choose to not go through with the pregnancy after finding out that news, you are also a monster.
We tell mothers off for their grief and their anguish when they find out their child has extra medical, educational and physical needs, because they aren’t being the mother their children need, but then we refuse to fund systems and support that might take away that pain and grief.
As a society we can’t have it both ways. Either special needs children and their families get the support they so desperately need, or finding out your child has a syndrome or a condition, or a disability, is always going to be something that has to be adjusted to. Mentally, financially and emotionally. And for some it might be too much to adjust to.
I don’t try to run away from my decisions when it came to Eva. The fact of the matter is I saw my life stretch out in front of me in a way I had never ever imagined it would, and I didn’t like it. I saw myself caring for my child well into my elderly age. I saw myself as the carer to a child who would never grow up, or walk, or talk, or be independent, and the reality of that thought, with all its financial and emotional and mental struggles was too much for me. And for two months I tried to escape it.
I accept responsibility for those decisions. But I also know that if having a special needs child didn’t automatically mean you would never work again; or struggle to find funding for equipment and new cars and house adjustments to accommodate the new equipment; or spend half your time in hospitals for appointments and illness; or lose all your friends and relationships because you have no time or energy to spend with them; or have to fight on a daily basis with educators and therapists to get your child what they need, when the majority of those educators and therapists are hamstrung by the same limitations that you are, finances; or cope with the knowledge that one day you will die and your child may not be taken care of properly; or any of the other realities some of these families face because of lack of support both financial and physical, then maybe the news that your child has special needs wouldn’t take quite so much adjustment. Maybe the struggle for these families would be lessened and they could enjoy their baby instead of worrying about the future they wouldn’t have. Maybe they could focus on what was really important, their child’s quality of life, instead of worrying about the rest of it.
When this woman contacted me and wanted my advice I saw all the perspectives she was seeing, and I also saw my own. I saw my view of my life and how Eva made it better. Despite all those challenges and worries and grief, she made it better. As special needs parents we do learn to love in a way we didn’t know we could. We learn to appreciate the small things. But talk to anyone and they will still acknowledge it’s incredibly difficult sometimes. You fight battles in your head and heart and in person that you never thought you would. And that doesn’t have to be that way. Parenting a special needs child is a challenge in itself, it doesn’t need to be harder than it already is. The lack of support provided by society, ratchets up the challenges exponentially, turning a challenge and a journey into a path full of impossibility and dead ends.
It doesn’t have to be that way.
But while it is, I will always say to women like this mother who contacted me, to my guilty conscience, to any mother wondering how to move forward, that whatever decision you make for yourself and your child is the right one.
NB: I am firmly pro choice when it comes to women’s decisions around whether to keep a pregnancy. I was this way before Eva was born and continue to be this way now. I think every decision made like this is individual and comes with it’s own thought process for each and every person who has to make it. While I have changed my mind about what I personally would do if I was to be pregnant with another baby with extra needs, I do not think of this as the “right” thing, just the decision I personally would make.