16 May New mum – Baby with Down Syndrome
I recently celebrated my first mothers day. I have had my new baby Ariel, for 3 months. The whole experience has been a lot different to what I thought it would be. The fact that Ariel has Down Syndrome has obviously changed my life and for the better I might add! My partner Joe and I did not know Ariel had DS until 5 minutes after giving birth. It is pretty full on giving birth especially without an epidural. To be told something like that straight away was quite surreal. Joe and I both took it well. We were not disappointed with our baby at all. It was a shock to deal with initially. My baby went straight into special care, at around 4am Joe went home and I went to my room alone. Obviously I did not sleep that morning. How was I going to tell everyone? I had started getting messages on my phone and posts on Facebook asking if she was here yet. WTF was I going to do???? I did cry a lot but I am a person who cries easily and that was mixed with the shock of diagnosis, baby Ariel in special care, coming off morphine, dealing with the trauma of giving birth without epidural (wtf was I thinking…??) and the hormones. The whole week in hospital was hard as Ariel was in special care the whole time due to oxygen levels being low and they had to keep checking her heart. At least a third of all babies with Down Syndrome need open heart surgery before leaving hospital. And that is not all, they have a long list of possible health complications that need to be checked for (see my previous blog post here) and it was all very scary and sad.
I wanted to write this post in hope to help any new mum with a baby diagnosed with Down Syndrome. I realise there is loads of great info out there but these are some of the things I wish I knew about before.
1. Tell your friends and family as soon as you are comfortable. It is amazing how kind and supportive people will be. I am overwhelmed with the kind messages of support from the people in my life. My “social media friends” and old friends from school that I havent seen in years have really been so supportive and it has meant the world.
2. Take your time to bond with your baby. Ask people to give you space if you need it. It is a lot to take in. You will also be busy with specialist appointments for the next 3 months. 3. Read this book asap – you will feel honoured to be the mum of a child with Downs Syndrome afterward.
The first 3 months Challenges:
1. Ariel did not wake up and eat properly at the beginning and didn’t gain the weight she needed on time. I wish I knew it was normal for her and to be patient and don’t stress too much eventually it will happen. I wish I knew to use the growth chart for the babies with Down Syndrome. Unfortunately I didn’t get any lactation consultations in the hospital because Ariel was in special care. I wish I had stayed and extra day in hospital to learn all the things I missed out on.
2. Loads of specialist appointments…. I felt I was missing out on normal baby time but in saying that, when visiting children’s hospitals and seeing lots of sick kiddies I felt so lucky that Ariel was not suffering in any way. Rewards: 1. Ariel sleeps all through the night every night so once we cut out the night feeds I was no longer sleep deprived. Talking to other mums who have and have had babies with DS all experience the same thing! so good…. 2. Learning and growing as a person. I feel so much stronger than before. I now care about my health and well-being a lot more. Having a child with special needs may mean she will need to live with us into adulthood. I need to live a long and healthy life so I can be there for her.
3. New friendships and learning who is really there for you. I thank all of You ( you know who your are) for your support. The heartfelt messages and phone calls I have received have made this journey so far so much easier. I really feel the love and I love you all right back xxxxx