In my Nest: Living with a child with Special Needs

I haven't been blogging for a few weeks now, and it's because our daughter Emmy has been really sick and was hospitalized for just over a week. This is the 3rd time in 4 months that she has been hospitalized for bronchiolitis. The last episode (prior to this one) was only 8 weeks ago and she got very sick and had a collapsed lung and a cardiac arrest on the way to the Children's Hospital. They were able to revive her in the ambulance and she made a very slow and steady recovery. 

But Emmy is a fighter! She always has been and I'm sure she always will be. I'll try to not share too many personal details, but the first year of her life has been a roller coaster for the whole family. I'll start from the beginning. At our 20 week ultrasound we found that she was smaller than normal and the docs tossed around the possibility of cleft pallet, down syndrome, or brain damage and advised that if we wanted to terminate the pregnancy that we should make a decision quick. That wasn't an option for us, we firmly believe that at all costs we should let the baby live, if that's not your opinion that's fine. 

We had regular ultrasounds and she was still very small and I was losing amniotic fluid, so we knew that I probably wouldn't be carrying her past 35 weeks. At 33 weeks I was working full time and busy getting ready for the baby and was having regular check-ups. One Friday I went to the hospital for heart-rate monitoring of the baby and a quick ultrasound and they said that they'd book me in for an emergency caesarean that night or the next morning! We chose to do it that night, because I wouldn't be able to sleep that night anyway. At 8:15pm our little Emmy was born, she was 1.54 kilos (3.6lbs) and was small for her gestational age. She was in the special care nursery for 5 weeks. During that time they did some blood tests and found that she had a very rare chromosomal abnormality called Trisomy 13 (or Patau Syndrome), but her's was so rare because there were variations of the abnormality. It hasn't been documented here in Australia and we've yet to find any other case like her's in the world. 

There are a lot of issues with Trisomy 13 babies; only 80% of them are born alive and only 20% of those make it to their first birthday. They often have mental retardation, problems with heart and kidneys, and have other growth delays. Short life expectancy. Some have "rocker foot" where the bottom of there feet are so rounded that they can't walk on them. Emmy doesn't exhibit any of these features; she shows some physical features like a small dimple in her left ear and wide set eyes. 

She did have hip dyslpasia which she was in a hip brace for 7 months. She currently has glasses to help her crossed eyes and her long-sighted vision. She has very tiny bronchial tubes and immature lungs so she's susceptible to respiratory issues, which is why she's been getting sick with bronchiolitis so much lately. 

There are some other minor things that we've had to treat with physiotherapy and speech pathology. I went back to work part-time when Emmy was 6 months old, but I've now resigned and am staying home full time with Emmy. I'm loving it, and let's be honest her doctors and specialist appointments are a full time job, plus I get to be home with my little cheeky monkey! 

We've laughed, we've cried, we've grieved almost losing her a couple months ago, but most of all we're in awe of our daughter and just love her laughs and the joy she brings to us. Because her case has not been documented before we don't know what to expect of her, but she's trumping what the doctors are expecting of her. 

I wanted to share this, because I believe each and every kid has some special need in their lives, but some kids have more than others, and I'd like to offer my support and warm thoughts to other kids and parents that are going through tough times as well. 

photo 1 Joseph Kan Photography
photo 2 by me