Myth Busting – Meet some “young mums”!

 At 20 weeks pregnant I went for the usual scan and check up like everyone does at 20 weeks. The sonographer went quiet, said she just needed to get one of her colleagues. It’s then you feel something is wrong with your baby.

They came back in and explained they just wanted to scan the heart again because they were slightly concerned. It became apparent that something was wrong with Erins heart. They went on to explain that she had only two chambers instead of the usual 4. She has a complete AVSD, but even bigger than the usual complete AVSD. I was informed that this heart defect was common in children with down syndrome. I just blurted out ’It cant be, I’m too young!’

I was offered an amniocentesis at 24 weeks (with 1% chance of miscarriage) and at 32 weeks (with 0% chance of miscarriage). I felt like I had to know if my baby was going to have down syndrome but, already being fully committed to the pregnancy didn’t want to risk a miscarriage. I went home to discuss my options with my family and hear their thoughts as I would be living with them and we would all be affected by it. I have an older sister with severe special needs and bringing a special needs baby into the equation would be difficult for her to understand. I made the decision of wanting to find out If my baby would have downs or not, so I opted to have the amniocentesis at 32 weeks. I was to be induced at 39 weeks due to her heart, they didn’t want me going into labour ’naturally’ by myself.

When the test was done, the results came back a week later as positive for trisomy 21. My world just swirled around for days with endless questions and what ifs! I had a lot of support from the antenatal team, they introduced everyone before the birth instead of the after. They showed me round the ward and I met consultants to discuss things. That support network during my last few weeks was amazing! They outlined everything for me and gave me options and told me all the positives about having a baby with Down syndrome.

Erin birth was pretty straight forward. I was induced at 12-10 pm and light contractions started at around 1ish. She entered the world at 11-09pm on the 2nd January 2013 weighing 7lb 3 1/2 ozs. She was really purple and boy did she have a good set of lungs!! They struggled to pick up her sats, but after she had calmed down and had a feed she was fine! I didn’t get to hold her much after she was born as they whisked her away to check her over. There were allsorts of doctors and neonatal team in the room, its rather daunting at first! It was after she had her first feed from me and then she didn’t wake for 7 hours that they started to get concerned. All she was doing was sleeping. She was never awake and if she was it was only for 5 mins and she was asleep again. We were moved from transitional care to NICU as there were problems with her digestive system; they discussed with Bristol children’s hospital, we were transferred and at 4 days old she had her first surgery to repair a duodenal stenosis. She spent 3 months in Bristol hospital and then my local Plymouth hospital recovering from surgery, learning to feed again and starting a few heart medications.

It was rather stressful after birth as she was whisked away and then transferred as an emergency up to Bristol without me. It was very emotional and I cried quite a bit! You  feel helpless and like you cant do anything, I couldn’t even hold her for a while as she was in so much pain, its heart wrenching. It was difficult for my family aswell as me and my mum were in Bristol for 2 months and then me and Erin were in Plymouth for another month, so they found it hard having to visit me and go to work at the same time and care for my special needs sister too! But we have a very good support network as a family so we were constantly calling, messaging etc and supporting one another!

She then had her 1st heart surgery at 5 months old to place a PA lung band on, because the heart was under so much pressure but couldn’t be repaired yet, the main concern was protecting her lungs. This is why she had the band placed. She recovered well from this and was out of PICU and back on the cardiac ward by day 2 and had most of her tubes/wires took out. But she struggled to keep up her sats and they were dropping to low levels without oxygen support. We spent various times on and off the oxygen, trial periods, machines bonging and sleep deprivation, it all become the norm! We were really worried about the oxygen and having it in the house, but now tripping over leads and cords and clanging tanks together is all the norm for us, it becomes an everyday routine for us all! We have the best oxygen delivery man, they make it all easier for you!!

Nearly 2 years down the line, I couldn’t be happier! Erin has taught me a lot and made me a stronger person with this journey she’s taken us all on! Its so rewarding and I’m glad I found out the diagnoses when I did. She still has another surgery at the end of may/June time (2014), but like usual, she’ll come out the other end smiling! This will hopefully fix her Heart defect and be the last of her surgeries, but we wont know until afterwards! We are keeping fingers crossed! Developmental wise she is doing brill, she can sit up un aided, commando crawl and bear her full weight onto her legs. Physio is trying to work on crawling with all fours!

She has a lot of health professional’s in her life and is still the oxygen but that doesn’t hold her back, unless she runs out of lead! Haha! She’s always on the move, never still and always inquisitive of new things and old things! My special needs sister, Charlotte, is really good with her to. We weren’t sure on how Charlotte would react to Erin, but they are brill with each other and Erin is always looking for her, even if it is behind a stair gate!!

I hope you enjoy reading Erins journey and how much joy she has brought to us, she has a Facebook page where you can follow her journey called Erins journey with Down Syndrome. Im also on the Future of Downs Facebook group if you wanted to ask me a question about anything!!