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Dublin: 9 °C Friday 6 December, 2019
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'The doctors have no idea how to treat her condition': Giving birth to Ireland's smallest surviving baby

Katie Keogh writes about her baby Charlotte who was born with an extremely rare condition.

Newborn baby in hospital.
Newborn baby in hospital.
Image: Shutterstock/Kwangmoozaa

I GAVE BIRTH to the current smallest surviving baby born in Ireland, and she continues to break records every day in her fight for survival. 

My baby Charlotte was born on 20 June this year and she weighed just 390g – less than a pound. She was delivered by c-section as she was severely growth restricted.

The doctors have no idea how to treat the condition Chronic Histiocytic Intervillositis, which causes placental failure. It’s extremely rare and also has a high recurrence rate, which was part of my experience. 

My son had the same placental condition before he was born sleeping in May 2017. We had the opportunity for a post-mortem which then showed the condition within the placenta.

This gave me an opportunity to gather my own research on it before Charlotte was even born.

Although it’s a rare condition, I’m certainly not alone. There is a Facebook group with parents whose children have the same condition with only around 500 members from across the world. 

Generally, I would be quite wary of these groups because I know there can be a lot of different opinions but I think because the condition is so rare and the group so small, we just all share our stories with each other, guide and support each other along this journey. 

It’s also useful because we can sometimes go back to our consultants and explain that a certain combination of drugs worked for a large percentage of patients, and tell them about the amount they were taking, etc.

Some consultants in other places like France and the UK are working on this condition on a regular basis and they have had a lot more success in delivering babies to full-term. I hope Ireland can get to this stage in the future.   

Visiting Charlotte

I had to take time off work after my son was stillborn as I was then diagnosed with anxiety and depression.

Due to taking time off work, I didn’t have 26 weeks worked before Charlotte was born so I didn’t qualify this year for maternity benefit.  I was in a full-time career before all of this and I’ve had to give up everything else to become a mum.

But now I wouldn’t change it for the world.

When I became pregnant again, I was attending the hospital every two weeks with appointments and check-ups. Carrying constant fear but also hope. 

When Charlotte arrived, she was breathing, kicking and punching.  Thankfully they had equipment to fit her and treat her.  

They still don’t know how we can prevent this condition in the future, but thankfully with the opportunity to deliver Charlotte early she has been growing and thriving. 

The doctors and nurses in the hospital really had to fight for her to get to a size they can understand and that they have worked with before. 

Up until recently, a little part of her heart had remained open after she was born. If she was brought to full term, it would have closed up but this just wasn’t possible.

She was treated for this with paracetamol to help it close off and she is able to breathe better on her own now. 

To be honest, I’m exhausted at the moment. I’m expressing breast milk which has to be done every three hours and at least once every night between midnight and 6am. I’m planning my day around each three hour pump.

I get the bus from Arklow in Wicklow to Holles Street Hospital every day because it seems to be the cheapest option. 

I leave home between half 11 and half one each day, depending on how tired I am from the day before. A ticket costs €9 each way. 

My partner works in Dublin and he goes to the hospital after work at half six in the evening. We then spend an hour with Charlotte before the nurses do handover for an hour to see how she’s doing. 

We’ve decided that half seven is our cut off time for visiting. If we wait until the handover is finished at half eight, it’s going to take us an hour to drive home and we wouldn’t be back home until 10.30pm or even later. 

The future 

We don’t know at the moment when she will be discharged from hospital. She has to get to 2.2 kg in weight before there is a possibility of her coming home and she is 1.9 kg now, so she’s getting there.

We just need to work on feeding and breathing. Charlotte tried her first bottle recently and she guzzled it and absolutely loved it. I finally feel like I have a baby now. 

The nurses and paediatric team in the neonatal unit are absolutely amazing and it takes a very special type of person to do their job.

The knowledge they have is incredible and the amount of care they also have for parents is admirable. I would have lost my mind if I didn’t have them.  

It’s important to remember as well that it’s okay to seek help and support for your mental health. It’s something I have struggled and dealt with since I lost my son in 2017 and the support from the mental health team has been amazing.

Getting to know other mums in the hospital is lovely. You make some really amazing friendships and you’re almost like sisters. You really bond and keep each other sane when you’re all stuck in there together.  

If any changes could be made, little things to make the experience more comfortable for the parents would be fantastic.

You’re within four walls looking at the same stuff every day sitting on a waiting room chair, in a dark room for half of it with lots of monitors so it can play on your mind a little bit sometimes. You get tired and frustrated.  

The parents’ room tends to be used for mums who stay overnight before they can finally take their baby home, but it kind of takes away that one space where parents can escape to for five minutes. 

There’s only one bathroom in the unit as well. Generally it’s free and it’s fine, but Mums staying in the parent room could be having their showers there while there could be a few of us storming in on top of her or waiting outside.  

For any parents in a similar situation or those who could face it in the future, it’s something you fall into a routine with. There is no right or wrong way during this journey, you really do have to take each day as it comes and don’t be afraid to ask questions.  

I’m not looking for pity here: I truly want this to be a positive story. It’s important to remember to try to enjoy the journey rather than just stressing over every little thing.  Something I will take on board myself next time. 

The financial strife is really difficult, but it’s important to remember that you have this new job to do and it’s all that matters.  

You will get there, just make the most of every second and treasure every moment.

Currently, Children in Hospital Ireland are asking parents and guardians who have or have had a child in hospital, either as an in-patient or attending outpatient clinics, to participate in a Financial Research Survey. The survey takes approximately 15 minutes and is available here. The group says that by taking part in this survey, parents will “help to inform policy recommendations to government on improving supports to families”.

If you would like more information or to request a paper version of the survey please email research@childreninhospital.ie or call their offices at 01 290 3510.

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About the author:

Katie Keogh

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