Our story begins much like many of the others I have read here. Throughout Vicki’s pregnancy a lot of friends, relatives and colleagues had commented on how “neat” her bump was. While these comments were well-meaning, as they continued into the third trimester the seed was planted in Vicki’s mind that something might not be quite right. She raised her concerns at a routine 32 week antenatal check-up and the midwife referred her for an ultrasound where it was picked up that our baby was sitting somewhere below the 5th centile, indicating IUGR. The following weeks involved close monitoring and, at 37 weeks, the decision was made to bring Vicki in to induce labour.
24 hours and an emergency cesarean section later we were in the recovery ward staring in wonder at our brand new, tiny, gorgeous daughter; Mia Rose. For the first few hours after her birth Mia was able to share a room with Vicki but as her blood sugar was low and she wasn’t feeding strongly she was transferred to the Special Care Baby Unit, where Vicki was able to join her a couple of days later. Although there was nothing other than her size that rang any alarm bells for the medical staff, the consultant paediatrician told us they would need to investigate why Mia was so small and at that point he suggested it could be Turner’s syndrome. A week or so later the chromosome test results came back and that was the first either Vicki or I had heard of Wolf-Hirshhorn syndrome. The paediatrician, by his own admission, hadn’t encountered WHS previously and after a pretty stark overview he handed us a Wikipedia print out which, as you’ll all know only too well, made for some very dark reading indeed.
The following week Mia was given the full gamut of tests and examinations by opthamologists, cardiologists and audiologists to name but a few – and words could not express our relief when everything came back pretty much as ‘normal’, with the exception of a small cyst on her brain that will be followed up with an MRI later this month.
The staff in the unit were absolutely amazing and gave us all the support and advice we needed to establish a feeding plan that worked for Mia, which consisted of a combination of bottle and tube fed expressed breast milk, and taught us how to pass the NG tube should we need to do so. After three weeks Mia was back up to her birth weight (3lb 13oz) and we were able to bring her home. In the week since then she has gone from strength to strength and is now feeding exclusively from the bottle and piling on the pounds, well ounces at least! At almost four weeks old she is as bright as a button, a real little wriggler and seems to love the newfound freedom of being out and about in her pram.
Vicki and I are under no illusion that the coming weeks, months and years will no doubt have their ups and downs but, thanks in part to this site, we now feel it’s an adventure we are prepared and ready for.
Thanks so much to you all for sharing your experiences and I look forward to keeping you posted with how little Mia’s story unfolds.
Ross
If you enjoyed this article, please consider sharing it!
Thanks for sharing your story. I just love Mia Rose. That is the sweetest name and it fits Mia so perfectly. She is beautiful! Please keep us updated on how she is doing.
Welcome. She is absolutely beautiful! Great job Mia Rose for putting on weight. Keep it up!!
~Hilary
http://iwontweargrey.blogspot.com
Ross- Thanks for posting. Well written and great pictures. I love the hands shot- her tiny little hands are so neat. I’m happy to see that we’ve been able to provide a foundation of information to your family. I remember you a while back (I recall looking up your photography site) and am glad to hear that Mia Rose is doing well. She’s beautiful. Please keep us informed as you go through your journey! I also added Mia Rose as a Category for you.
Thanks Kevin, I left a comment on one of your YouTube vids a couple of weeks ago and your reply led me here.
You’re doing a really great job with this site – thanks again.
Hi Ross, your story sounds so similar to ours. So many tests, thankfully we too had positive results which reassuring that things may not be as bad as the dreaded print out. Thanks for sharing the story of Mia…
Breanna – Mum to Eve, nearly 1!
Welcome to the WHS family! Congratulations on the birth of beautiful Mia Rose. She is simply precious. I look forward to following your journey.
🙂 Kristy
http://www.ourlittledillpickle.blogspot.com
thank you for sharing your story, Mia Rose is beautiful and I’m glad things are going well for Mia Rose and family.
Mia is beautiful! I am looking forward to seeing this beautiful princess achieve so many wonderful things! I love the pictures!
You have a beautiful little girl – congratulations. Our first and only baby Matilda was stillborn due to WHS on 16th January 2010. Seeing your beautiful little Mia, I am so thrilled for you both. It’s so nice to see a positive story come out of a diagnosis that can often bring heartache and loss. Cherish her and hug her as often as you can. Best wishes. She’s a sweet little petal x
Thank you for your kind words, Sarah. I was so sad to read about Matilda; I cannot begin to imagine what a harrowing time you and your family must have been through this past year. Both Vicki and I are acutely aware of just how fortunate we are that Mia is as well as she is. We do, indeed, cherish her dearly, and you can rest assured she will definitely never go wanting on the hug front! 🙂
Great to meet your family Ross, Mia is so precious! I’m so glad you shared all the pics, I can’t even pick a favorite one they are all so cool. Keep us posted. Brodie is our son and he’ll be 2 in May and is our first and only child. You’ve already had such heavy news to deal with in Mia’s first weeks in life but I promise you there is so much laughter and joy and happiness too that comes with this journey and its important to hear those stories too in those first months of diagnosis. She is doing great! I can’t wait to see more of Mia.
Oh my goodness, Mia is adorable!! Thanks for sharing your story and the gorgeous photos! I look forward to hearing more about your sweetie!
Belated Congradulations on the birth of your lovely daughter and welcome to the world sweet Mia. I just read Mia’s 4th birthday update and came back to your first post to get her whole story. No matter how similar each child’s birth story is, each one is unique. I find it absolutely amazing that you were able to take Mia home when she was so small, and feed her successfully. The other miracle is your optimism. You gave Mia a wonderful start to life, parents who are skilled, adaptable and have a good attitude.
Thank you Shirley – in hindsight it was pretty incredible that they let us take her home so tiny, but we didn’t know any different. You’ll know that as parents we just do what we have to do for our kids and, without wanting to sound sanctimonious, Vicki and I have always felt that we’re the lucky ones having Mia in our lives.
PS. I think the unintentionally ambiguous title of my recent post may have mislead you; Mia will be 3 in January.