Hetav's Story, 23 Weeks   

My lovely baby boy Hetav Shah was born as a micro micro premmie at just 23+3 weeks. This was my first pregnancy and I had no idea that I was in labour!! I must admit even though being an allied health professional, I was so unaware of these things that had happened to me. When I was at the hospital and the Dr was explaining what it means to deliver a baby at 23+3 weeks and the consequences, my mind was blank - I could not think! I could not foresee or imagine what was ahead of us. We were given two choices; to keep him or to let him go.... I still remember the thoughts that I had, "what are they talking about?" I just could not take it all in and wasn’t ready to believe what was happening. 

We don’t have family here in Australia, only friends. So it was rather a very difficult decision and we thought, how can we let the baby go- he's ours!  

I was in labour since 14 January 2014.   I was admitted to Midland Hospital on 15 January 2014 and I was then taken to KEMH hospital in Subiaco where they tried everything they could to stop the labour but Hetav was determined to see this world and arrived on 16/01/14. It was a vaginal delivery, he had his eyes wide open and he was breathing! We had decided that if he was breathing on his own to give him support. We didn’t want them to resuscitate him. Luckily he was breathing! So he was taken  immediately and before I could see him, he was intubated and they gave him to us for a very quick cuddle, we took couple of photos and he was taken to the NICU. It was weird, a very very weird feeling as I was in the maternity ward without a baby. Every other room had babies crying and people coming in with flowers and gifts, we unfortunately had nothing. Luckily the nurses allowed my husband to stay with me. The doctors gave us 24-48 hours, the chances were that he would not survive. We were lucky that he was 630 grams at that gestation. His length 29cms. 

I was kept at the hospital for 4-5 days and then discharged. Whilst I was at the hospital, I was asked to pump breastmilk for the baby and it was very very difficult. We consented for donor milk and formula however there was a risk of developing NEC with formula. On the second or the third day one of the Dr's had said, "pumping breastmilk is the best thing you can do at this stage" for him and then I was determined, very very determined. I used to crazily write down each and every time I pumped, the duration, the volume. I used to eat traditional things to boost my supply, got medication from the GP and continued. I could see massive improvement in my supply. Going home without the baby was heartbreaking,  I cannot explain how we had managed that feeling to date.   

It was a roller coaster- a very emotional ride that still makes me cry. I wasn’t allowed to touch my baby until 1-2 weeks. I used to ask for a cuddle every single day however was not allowed as he was very fragile. Finally at the end of four weeks, I got my first cuddle!! It was so precious, and his sats had improved so much. I used to stay at the hospital all day - this was my new job. I used to sit next to him, watch him all day, used to express milk, and leave by 5-5.30pm. After that my husband used to visit him for an hour or two. Hetav was kept at the hospital from 16/01/14 till 01/06/14 almost five months. During this time, we had ups and downs, Hetav was intubated/extubated few times, was diagnosed with ROP and had surgery (that set him back), had grade 3-4 bleeds on both sides, some NEC (Was recovered), had PDA that had closed itself. I could say he almost died 3 times and came back. At one stage, when he was diagnosed with brain bleeds, we were called to make a decision or have surgery for a drain and a shunt. He was very tiny then. We went back home, we cried all night, made a decision to say goodbye to him, drove to the hospital and were surprised to hear he had some improvement and won’t require surgery!! Cannot explain how we felt that day but I knew he is a fighter and was determined to live his life - nothing was going to stop him.  

He has his premmie related issues (hoarse voice due to intubation, had multiple Laryngo bronchoscopies, had adenoids and tonsil removal, is short sighted, had his hernia operation at 4 years, had bilateral squint correction surgery and is diagnosed with mild CP, but he is a very beautiful, kind, happy, chattery and intelligent five year old. We are very lucky to have him in our lives and has taught us how to be happy and live life. 

He is walking, running, jumping and now also riding a bike (with training wheels of course!) things that we never thought would happen. We never imagined to be where we are now. He is the most amazing thing. We as a family have had our own ups and downs, physically and emotionally and the challenges that we faced with Hetav, but we are here surviving! Hetav is truly a miracle, cannot believe he will be 5 years in two days and is so excited for his birthday party!!  

He commenced Kindy at 4 years (5 day fortnight program - mainstream school) and we have decided to pull him back a year so he will be repeating Kindy in a four day per week program. We are so proud of him!  

During this journey, I must acknowledge how much our family (especially my mum) have supported us through this. I must also acknowledge, we have worked hard, really really hard to be where we are. Being an allied health professional I knew the benefits of therapy and hence we commenced physiotherapy just few weeks after discharge once and sometimes twice per week, and we haven’t stopped. We still have lots of therapy, physio once a month or every three weeks, speech every fortnight and OT every fortnight. I do lots of exercises with him at home (not so much lately due to second baby and my own study commitments). I am so proud of us and what we have achieved during these five years. and as many people say "you are a very busy household". I must admit that during these years, we were lost socially (we couldn't catch up as much with our friends or socialise or go out as much). And we still have our emotional vent outs when we have to work hard with Hetav!    


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