My Story: ‘There’s Something Unusual About Your Baby’s Brain’

We are honoured to present contributor Ruth Hannah’s story in this moving diary about her pregnancy.

This is the first of three parts.

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7th February, 2017

Just when we thought it might finally be safe to celebrate, we heard the sobering words of the sonographer.

“There’s something unusual about your baby’s brain.”  

This was an understatement. Even our untrained eyes could spot the sea of black where our baby’s brain matter should be.

Thereafter, we had another scan. The result of which: severe ventriculomegaly (fluid in the brain causing the ventricles to become dilated).

That was the point at which we realised that we would have to start getting used to living with uncertainty.

Our little boy (yes, we found this out at the scan) may not make it to birth. If he did, he would be severely mentally handicapped. We were heartbroken, of course we were. Our little miracle baby that we’d prayed so hard for (having lost 2 pregnancies previously) was sick.

Then came the realisation that we were mourning someone who was not yet gone. At least that’s what I thought.  Actually, we were mourning the loss of the future we thought we would have.

In the meantime, our little boy’s heart was beating away and his gentle kicks reminded me “I’m still here Mummy.” What good would it do our little boy if we sat about crying, not going to work and not eating properly? None.

Every day that our little one is still alive is one to be celebrated.

 

A life worth living

8th February, 2017

After hearing about our little boy’s problems, we were offered the opportunity to terminate the pregnancy. For me, this was a no-brainer. Who am I to play God? To decide whether my son lives or dies? To say that a life of disability (if he lives for long enough) is not worth living at all? If I made this decision, I could never forgive myself. Never stop wondering “What if…”

So we have left it in God’s hands.

In the meantime, we face a fierce battle between mourning the life our son could have had and trying to be thankful for every minute we still have him.

We struggle to make decisions such as “Should we buy anything else or just wait to see for a bit longer?

Will we try again for a baby one day or is this it for us?

For now, we remain thankful that our little boy’s heart still beats and are hopeful that he continues to fight on for as long as he can.

1 step at a time

 9th February, 2017

In some ways, we’re lucky. Lucky that we now have the opportunity to make the most of the time we have left with our son. We’re going to take him to see some of our favourite beautiful views in Scotland, make sure he tastes our favourite food and take lots of pictures of him with his mummy and daddy. All this before he’s born. That might seem silly, but to us it would mean the world. To feel like we’d been able to share all of that with our little boy.

So many of our friends have been saying prayers for our little family and I believe they are being answered, in God’s own way. Last night, my husband was able to feel our little boy kicking inside my tummy. What a blessing! One we thought we may not have.

Although we are taking things one day at a time, the first milestone for me would be making it to 24 weeks. That’s the point at which our little boy would be officially recognised as a baby, a little person. He would be entitled to a birth certificate. Perhaps that shouldn’t matter, but to me it does. So if we’re lucky enough to be blessed with another 3-and-a-half weeks, we are going to celebrate by telling our friends and family the name we’ve chosen for our little boy.

Looks of pity

It’s always been something I’ve hated. Sympathy. I don’t want people’s sympathy. I want to be understood, not pitied. But the problem with a situation like this is that nobody I know has been through anything even remotely similar; so in all honesty, they don’t understand.

When being asked “How are you?” for the umpteenth time each day, my head fills with conflicting thoughts.

“How do you think I am?”, “Seriously?!”, “They’re only trying to be nice, they don’t know what else to say”, “My boy is still alive, please celebrate with me!” 

All of these thoughts swimming round in my head each time I hear the same question. And in spite of this, each time I give the same answer: “As well as could be expected.”

 

Questions

9th February, 2017

So far, I’ve found two distinct groups of people. Those who will ask questions and those who will talk about anything and everything else, in a bid to avoid the elephant in the room.

The latter group might think they are being considerate, not to talk about something that might upset us. I understand that they mean well. Or perhaps they just feel incredibly awkward and don’t know what to say. What I want these people to know is this: Our son is not a taboo, we want to talk about him, we want to help people understand what we’re going through and how they can help.

To the group who ask all the questions, I say: Thank you, thank you for acknowledging our little boy and for asking about him. Please keep asking questions, just be sure to keep any platitudes to yourself. We really do appreciate what we have, but are understandably upset by the sudden change in our situation.

 

A tale of two halves

10th February, 2017

I had a realisation yesterday that one of the reasons that friends or family perhaps don’t know what to say is because our own minds are in turmoil.

On one hand, we want them to grieve with us. We are heartbroken to hear of our child’s lot in life. His chances are slim and even if he makes it, life will always be a battle for him.

At the same time, we want them to still treat this as a pregnancy. I have a living, breathing human being growing inside of me and it’s nice when people acknowledge that, as they would during a normal pregnancy. For example, saying “You stay right where you are, I’ll get it. You’re pregnant after all.” “How are you feeling? It looks like you might have a sore back.”  I still have all of these “normal” aches and pains. Everything about this pregnancy is normal, except for the uncertainty of the future.

So we can’t be too upset when people focus too much on one half of the situation, it’s a big ask for people to understand the complexity of the emotions that accompany a diagnosis like ours, when we are still trying to make sense of it all ourselves.

 

Appointments

11th February, 2017

Yesterday we had our first appointment, following our son’s diagnosis. We didn’t know what to expect.

We were taken into a room with four health professionals.  (I was glad I had my husband there, so as to feel somewhat less outnumbered!)  The consultant ensured that we had understood all of the information from earlier in the week and gave us the opportunity to ask any questions we had. We were told that they would like to see us fortnightly, however if we felt that this was too often or not often enough, this could be changed. This was a relief to me as this was exactly the sort of time between appointments that I was hoping for. Following this discussion, the consultant and junior doctor left us with the midwife and student. At this point, we chatted and I received the same midwifery care that any other pregnant lady could expect at the same stage in pregnancy. The midwife even offered to listen for baby’s heartbeat. I knew we had been in that room for quite a while then and said that we would really appreciate that, but obviously only if she had time. She couldn’t have been nicer. Of course she had time, she told us. We were given some advice about counselling and our next appointment letter before we left.

When we left the hospital, I told my husband that I felt so supported. I hadn’t expected that. Not once did the subject of termination come up (after we turned it down initially and were told that we could change our mind at any point). They had listened to our wishes. They had told us that they would do everything they could to support us through the pregnancy and beyond. They had acknowledged that we were just trying to do our best for our baby. The midwife had treated us like any other couple expecting a baby.

Our care was in no way substandard as a result of our diagnosis or decision to continue with the pregnancy. We were in that room for 45 minutes. I don’t know how long was allocated for that appointment but not once did anyone look at the clock or hurry us along.

While our son’s diagnosis hasn’t changed, I feel more at peace as a result of the care we experienced yesterday. A little human kindness goes a long way.

What to say

15th February, 2017

At times like this, I realise how lucky I am to have such a great support network of friends and family. They have rallied round, offering us space and opportunities to talk when we felt ready. They (for the most part) have said the right things. There are so many “right” things to say in the circumstances, if you know someone well enough. From asking how we are, to asking questions about the diagnosis, to chit-chatting about other things; these can all be the “right” things to say.

It’s more difficult for those who don’t know us so well. Friends of the family or casual acquaintances for example, just simply don’t know what to say. Some try “How are you?” but understandably feel that this perhaps is a bit of a silly question at such a time. Others just smile awkwardly. It’s nice to know that people are thinking of us and saying prayers for us. They want us to know this but don’t know how to tell us.

You don’t have to tell us. We can tell by the looks on your faces that you know and are thinking about us. Maybe this isn’t what everyone would want, but I just want to be treated normally.

 

Life goes on

18th February, 2017

We find a way to live with the reality of our situation. Not just survive but actually live.

Some things return to “normal”, whatever that means (in our case, the way they were before). My husband returns to work and I catch up with some friends.

Some aspects of our lives change, of course. We make more time to go out and see the places we love, more effort to cook wonderful food (although this may also be because I have more time, as I’m still off work).

We appreciate every moment we have with our boy. We talk to him, about him and we celebrate the little things.

 

The Best Days

20th February, 2017

The best days are when we feel normal. By we, I mean my husband and me. Days when we laugh hysterically at our shared jokes. We are now at a point where we can include our son in our jokes, talk to him and spend time as a family. All this without feeling upset. Some days. Other days, we just wake up feeling sad. Sometimes, all it takes is something we say or do to remind us of our situation and cause a pang of sadness. There are conversations to be had:

Do we want to hold our son as he dies or would we prefer medical professionals to attempt to help him; risking the last thing he sees being strangers, rather than his parents?

Burial or cremation?

If we donate his organs (which we want to), will we still get to hold him?

These are conversations that must be had, before it’s too late and decisions are out of our hands.

But through it all, I feel him kick.

 

23 Week Appointment

24th February, 2017

So today we went back to the hospital for our second appointment, since the diagnosis. Although there was a lot of waiting around (as the consultant was in theatre), what really stood out for me was the humanity of the other doctor we saw. She asked us if we’d picked a name for our little boy and she then used his name when referring to him. I wasn’t expecting that.

Sometimes I think that medical professionals try to de-humanise unborn babies with such poor prognoses. Maybe that suits some people but not us. I am very grateful that our experience of hospital staff has, so far, been very positive.

What we did find out during our appointment was that our son will be eligible for organ donation from around the 28th week. This will be our next milestone, if we reach 24 weeks.  

 

Thoughts of Labour

26th February, 2017

For most first-time mothers, the thought of labour is somewhat frightening. The fear of pain and trying to make sense of conflicting advice about pain relief.

For me, this fear is different. The pain I fear is not physical.

There are two possibilities for us, where labour is concerned:

1) Our little boy will have already died before he is born. The thought of having to give birth to my child, knowing that he is not alive breaks my heart.

2) Our son will be alive when labour begins. Although not as heart-breaking as the first scenario, this carries a great fear of the unknown. Will he breathe on his own? Will he live for minutes, hours, days? Will we have the chance to introduce him to our family before he dies?

These are the thoughts I cannot push from my mind.

This image is me right now. Some days I don’t bother with the umbrella but other days I take it because I know it will rain; sooner rather than later.

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Parents as Fixers

March 4th, 2017

Growing up, I believed that if there was a problem, my parents could fix it.

An injury: Kiss it better, put a plaster on it, cut it off (in a household where sarcasm was rife and complaining about a minor injury was seen to be “milking it”)

Boy troubles: A shoulder to cry on, comforting words, find out where he lives and hunt him down (just in my house?)

And if my parents couldn’t fix it, they could certainly point me in the direction of someone who could help.

My husband and I can’t be those fixers. There is nothing we (or the doctors) can do to help our little boy. The best thing we’ve given him is a chance.

 

24 Week Milestone

March 4th, 2017 

We made it. Our first major milestone.

In a time of such uncertainty, we now have one guarantee: Our son will get a birth certificate when he is born, regardless of whether or not he’s born alive.

I can’t quite believe it’s been a month since our 20-week scan. A month since our hearts were broken. A month since we cried in each other’s arms.

What a difference a month can make:

My husband has returned to work and I will also be returning to work very soon. Tears are no longer commonplace (although that’s not to say that we don’t have bad days). Our hearts no longer feel broken, just weather-worn in parts. We are in a place where we can be thankful for what we have.

We are looking forward to sharing our son’s name with friends and family now.

Our next milestone is 28 weeks… one day at a time.

 

25 Week Appointment

March 10th, 2017

Today we went back to hospital for another appointment. We met different staff again; but again, they were very nice.

The midwife did the usual pregnancy checks, as well as agreeing to organise for us to meet the hospital chaplain at our next visit. The consultant did a scan, showing that the fluid in our son’s brain has not increased by much. This is as good news as we could hope for really. The other checks showed that everything else about our boy is perfect. His heart, his other organs, his body.

Then followed a discussion with our new consultant, who wanted to know what we already knew about our boy’s condition. Having heard for himself that we’re reasonably well informed, he expanded on some information and then discussed some arrangements for an MRI scan. The idea behind having this scan is to look for any blockages and find out if anything could be done to help our baby, if he’s born alive.

The consultant gave us one statistic; which is more than we’ve had from anyone so far. In cases like ours, babies have a 40% chance of not making it to term. What I heard was “your baby has a 60% chance of making it to term.” I’ve never been on the right side of statistics up to this point but we can only hope. He also said that although most babies who do make it suffer severe disabilities, you do hear about miracle cases. This is the first glimmer of hope that anyone has given us. Just a glimmer, but it’s enough to convince me (if I wasn’t convinced enough already) that this decision is what’s right for us and for our son.

So we don’t need to return to hospital (apart from to have the MRI scan) for 3 weeks. Only time will tell what the future holds but in the meantime, our boy is always in our thoughts and prayers.

 

Read the second part of Ruth’s story here and the third and final part here.

 

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Read next: My Story: Losing a Baby to Miscarriage

Miscarriage

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