I have no idea what it must be like to have a child who hasn’t developed as you expected.

To have your hopes and dreams for your child’s future, for your life as a family shattered.

That even though your child is born and lives you still grieve for the loss of the child you thought you would have.

Before both of my scans I was petrified that the sonographer would tell us that something didn’t look quite right and that she needed a second opinion. There are so many things that can go wrong and I know about a large number of them.

I also know about the things that can go wrong in labour; babies who have become stuck or are taking too long to deliver, whose mother’s have had a severe hemorrhage or a placental abruption or the umbilical cord has snapped. All things that starve the baby of oxygen and can cause severe, even fatal brain damage.

The only reason that I didn’t think too much about those was because I was convinced I was having a c-section and then when I did actually go into spontaneous labour I was too preoccupied with making sure no one took the Entonox away from me.

I refused antenatal screening for Down’s Syndrome for the same reason; I know about the complications that can occur and I knew that if it turned out Squidge was high risk all I would do for the rest of the pregnancy was panic.

I know I wouldn’t have had a termination and knowing that Squidge had a chromosomal condition wouldn’t have changed that so, for me, I didn’t see the sense in being tested.

The Northern One wasn’t a lot better.

Fortunately for us Squidge was born a healthy, happy little boy and after a bit of a shaky start we’ve had our fair share of coughs and colds and tummy upsets but nothing else.

For many ex-NICU babies this simply isn’t the case and they leave the unit with health problems that will continue to affect them for the rest of their lives.

Damaged lungs

Damaged eyes

Damaged ears

Damaged brains

Cerebral palsy


Feeding difficulties

Oral aversions

Scars and strictures and other marks of repeated visits to theatre.

The list goes on.

Most parents are so full of love and so delighted to finally take their baby home that they look past all these difficulties and simply see their beautiful little one but occasionally we meet parents who can’t see past the ‘imperfections.’

It tends to be the dads; I assume because they don’t always develop the same depth of bond that the mums usually do and while mum is desperate to take her baby home and not have to leave them at the hospital every night dad just sees a life time of difficulty and expense for (what he perceives to be) very little reward.

We start to notice a problem when we see very little of dad, even at the weekends or when both parents visit very infrequently especially when we know that the parents don’t have any other children.

We do question them about their lack of visiting, being as non judgemental as possible but we do have to know why they aren’t visiting because at some point the baby will probably be going home with them so we need to address any issues as soon as they arise.

I looked after one gorgeous little boy whose mum clearly adored him but I never met his dad. Mum arrived on the unit one day in floods of tears after having not visited for a few days. She told us that when dad had learned that his son would have severe disabilities he announced that he didn’t want a disabled child.

On the days that dad was at home he’d banned mum from visiting and had told her that they should just forget about their son and instead try for a ‘normal’ one. When mum asked what he thought would happen to their existing child he said that the hospital would sort it out when they stopped visiting.

The poor woman was devoted to her little boy and would come to the unit for hours on her own to play with him, bath him and dress him, sing him songs, read him stories and give him cuddles. My heart went out to her but I left that unit before he was ready to be discharged and so I don’t know what happened to them.

Several of the babies I’ve looked after always looked very confused on the rare occasions that men actually talked to them. They were used to being looked after almost exclusively by women and the only men they saw were the doctors and other parents and those only in passing. I once asked one of the junior doctors to distract a baby while I changed a dressing on his face.

He knelt down next to the little boy who was absolutely transfixed; his big dark eyes as round as saucers. He didn’t see his own dad and that may well have been the longest interaction he’d had with a man at that point.

I think the saddest case of all was a baby who had been born extremely prematurely and whose parents had asked the neonatal team to do everything to save their child. A few weeks later the consultant told the parents that although their child was successfully breathing on their own they likely to be severely disabled.

At this point the parents stunned the consultant by asking if they could withdraw treatment from their child and allow him to die. .

They didn’t seem to understand that you can’t withdraw care from a child who is breathing on their own.

They’d wanted everything done for their baby until they found out that they weren’t ‘perfect’ and then they didn’t want them anymore.

I’ve only come across something this awful once and while I try so hard not to be judgemental the entire unit was in shock. We just couldn’t believe that the parents wanted to let their child go, not because it was the kindest thing to do for the baby because it was freeing them from a life dominated by pain and suffering.

Instead they wanted to let their child go because they didn’t want to spend their lives caring for a disabled child.

No one plans to have a disabled child and if we all worried about all the things that could go wrong then no one would every have a baby. It didn’t really occur to me that something might go wrong for Squidge until he tried to arrive at 26 week but I do know that all the decisions we made would have been made because that’s what we thought was best for him.

Those parents made a mockery of all the bereaved parents who would have done anything to take their child home.

Anything to be able to love them and cherish them and care for them for the rest of their lives

To be able to give them the best life possible, even in the face of severe disability.

Because to these parents their child was perfect.

Just because they were theirs.

9 thoughts on “Perfect

  1. K. Renae P. says:

    What an eye opening post. Thank you for sharing. I cannot imagine only having love for a “normal” child. Some people are horrible. But then there are people who are fierce advocates for children with special needs. Parents who would do anything for their child and work hard to help their child exceed any expectations.

    I’m going to think about them now. I appreciate those of you who have to deal with the others.


  2. Codie says:

    This gave me goosebumps. I can’t ever imagine not wanting my child because they were born disabled. It breaks my heart to think that anyone would consider that!


  3. aa says:

    I think I know who you are talking about, he did go home with his parents at the end of hid NICU stay 🙂 he has a nurse/health care worker helping to look after him full time, but last time I saw him he was doing quite well. Oh, and he was about to have a little brother 🙂


  4. babylossmama says:

    Even as a NICU mom I saw that. For the 26 days our son lived in the NICU, we were there nearly constantly. But the micropreemie girl who was his roommate? We never saw her parents once. When our son died I wanted to convince my spouse that maybe we should just stay to care for her. We couldn’t, of course, but I’ll always wonder what became of that little girl.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s