This month I’ll be focusing on something different for the Real Mums series – I wanted to look at different areas of motherhood. The controversial; the taboo; the ‘unspoken’ aspects of motherhood that we really should discuss. For April, I wanted to look at mothering children with illness. What these mums do for their children is nothing short of inspirational. Natasha is one of the most encouraging, supportive and inspiring mums I’ve met (and I’m lucky to catch up with her regularly in our mother’s group!). Her gorgeous daughter Clare has had numerous health issues, including baby heart surgery, in the space of her short life. Our hope is that Natasha’s story can encourage and support other new mums who might be going through a similar situation who are looking for advice, tips or a story of another mum who has experienced the same thing.
Hi Natasha! Thank you so much for joining us tonight for the Real Mums series and sharing your story as a mum of a child with illness. To start us off, could you introduce us to yourself and your family?
Thank you for inviting me Fi. We moved to Sydney from Townsville five years ago after my husband left the army and decided to return to the Shire where he grew up. When we first started trying I was diagnosed with PCOS which made conceiving difficult. After almost a year of trying we decided to have a break over Christmas then on New Year’s Eve to our surprise we got a positive result. I had a difficult pregnancy, first we were told that the cord only had two vessels not three then I had Placenta Previa (low lying placenta) and was informed that I could no longer lift or exercise only a couple of months in. As the pregnancy progressed Clare’s growth started to slow and I was being monitored very closely before my cervix started to shorten and I was reduced to bed rest. At 35 weeks and with Clare in breach position my OB made the call to schedule the Caesarian and Clare came into the world weighing 2.05kgs. I must say the c-section birth experience for me was a very smooth and calm time, not what you would expect for childbirth. As Clare was so small she remained in the Special Care Nursery for three weeks until she was able to feed without a tube. It was so surreal coming home without our baby but I was up there most of the day and the staff were so amazing in the end I found it to be helpful being a first time mother.
I would love for you tell us your daughter’s story. Could you share with us Clare’s illness – how did it all begin? How did you come across a diagnosis?
Well we have a really great Paediatrician who discovered everything while Clare was still in the Special Care Nursery. First there was the tongue tie which is very common and an easy fix. Following this was the hernia in her groin which after seeing a wonderful surgeon was diagnosed as a bilateral hernia (on both sides) and she had keyhole surgery to repair this at two and a half months old. The big one was the murmur in Clare’s heart which prompted an appointment to see a Cardiologist when she was two weeks old. Clare was still in the special Care Nursery at this time so this was her first trip outside the hospital even though it was only across the road. I still remember how strange it was taking an empty pram into the hospital to transport her and how heart breaking it was to then take the empty pram back to the car after she returned to the nursery. Her Cardiologist was very thorough and diagnosed the Atrial Septal Defect (ASD) straight away. An ASD is a “hole” in the wall that separates the top two chambers of the heart. This defect allows oxygen-rich blood to leak into the oxygen-poor blood chambers in the heart. We were told that this can be common in Premies and often corrects itself although in Clare’s case there was a very low chance of this happening due to the large size of her hole. The most likely option was key hole surgery to plug the hole once Clare was big enough (at least 6kgs).
This diagnosis must have come as quite a shock as a new mum. How did you and your husband respond to this news?
Yes it would have been a shock to anyone. It certainly brings things into perspective, I remember my husband and I were still butting heads over the spelling of Clare but after this appointment I realised that the only thing that mattered was having a healthy baby. Having lost both my parents to cancer I have experience with receiving bad news. It’s easy to fall into the ‘why is this happening to me and my loved ones’ but the truth is sometimes bad things just happen. The better thing to ask is ‘where do we go from here to move forward’. We were lucky that Clare’s diagnosis was repairable and we focused on building her strength towards the 6kg goal. I think being a new mum meant that I was able to give Clare all my time and attention, I think it would have been much harder had Clare had a sibling or two.
What happened the couple of months after the diagnosis? What process did you have to go through to help Clare to recover?
We had bimonthly check ups with Cardiologist until Clare was 4 months old when we were told that the hole was too large for key hole surgery and needed surgery immediately. By this stage Clare had started having ‘episodes’ as we called them where her lips would go blue and she would be gasping for air sometimes a couple of times a day. She was also exhausted most of the time and would take a long time to feed usually with naps in the middle of feeding (it didn’t help that she also had reflux). I was terrified of the ‘episodes’ but was assured by the surgeon that they were worse than they looked and that we had to wait for her to have surgery.
What was your experience of the health care system as you went through the steps for Clare’s recovery?
The first thing we learnt was that there is no private facilities for babies, we have to go public including the public wait lists. As Clare’s condition was not considered high risk right away (even though the cardiologist had wanted her to have surgery the next day after seeing her) and being two weeks from Christmas (short staffed) Clare’s surgery would be held off until the 5th of Jan. But the day before her surgery we were told it was being pushed back again. Unfortunately, Clare had her worst episode the night of the 5th where her whole face turned blue and she went completely floppy, we rushed her straight to the emergency where she was admitted for the night into the children’s ward. The next day after her fifth episode since being admitted she was transported to ICU in the children’s hospital where she was hooked up to oxygen and what seemed like a million machines for the weekend until her surgery on Monday. There is no sleeping facilities for parents in ICU although we can visit anytime so we were advised to get some rest over night, not that we slept much. The surgery went very smoothly and the recovery was quite quick once she was repaired. It’s a shame that it took such a terrifying event to get her repaired though.
Now three months after Clare’s surgery, how is she progressing?
Clare has recovered amazingly, she is finally feeding well and has actually grown a little bit of baby Chub. I do get a lot of shocked faces when I am asked Clare’s age and also get some very judgmental looks when some people see me handling Clare like the eight-month old that she is when they are assuming she is much younger as she is so small and still looks like a new baby.But it is amazing to learn how many people have experienced heart difficulties as I share my story. It also can be hard seeing Clare with the other babies in my mothers group the same age who are literally twice the size of Clare and can sit on their own and are eating solids while Clare is just starting to learn these things. But I have to keep reminding myself that she has had a different journey and she will get to each stage in her own time. I am amazed at how quickly she is starting to catch up already with her development.
You have definitely had some terrifying experiences through Clare’s young life – I personally find you such an amazing and inspiring mum to stay so positive and uplifting through such hardship. What is your secret?
I always try to stay positive as much as I can as life is better when you look on the bright side, it’s important to remind ourselves of the good things in our life when things get hard. I also like to think that when you have bad luck it’s usually followed by good luck. The big factor that kept me strong through these recent hard times is Clare, she didn’t understand what was happening and needed my support. Clare has always fed off my emotions so I remain as positive as I can around her and to be honest she has always been pretty happy even with everything she has been through.
What advice or encouragement would you give to other new mums who might be facing a similar situation to you what you have gone through?
The five big things would be:
- You know your baby best, if someone isn’t taking it serious then get a second opinion.
- It’s good to get evidence when you can, videos of Clare’s episodes helped the doctors to take it more seriously and better understand the situation.
- You can say no. Before Clare was transported to ICU one of the doctors failed to insert a cannula about eight times, I finally spoke up asking for someone else but was shut down being told they are all trained the same. I later learnt that I could say No I didn’t want her to try anymore.
- Feedback is important so that the health care system can better support our needs in future.
- Make sure you are getting support, it can be a very hard time and although our darlings need us to be strong there is no harm in reaching out.
Thank you so much for sharing your story with us Natasha! If you are going through a similar experience, please make sure you surround yourself with support networks. If you need someone to talk to, contact your GP or local Health Care Nurses (or me!).