The Mallett twins were born very prematurely at just 27 weeks on 29 October 2013. Twin 1, Mackenzie weighed 2.04lbs (925g) and twin 2, oAlexis weighed 2.05lbs (930g), both girls measured just 9.8in (25cm) in lenth. They were considered micro-preemies and they were therefore at risk of many complications.
Alexis had a little bit of a rocky NICU stay but nothing too serious and thankfully she came home after 84 days in NICU. She is a little behind on her milestones but we have been very blessed and she is doing really well now.
Mackenzie had a very rough NICU stay! In and amongst all of her complications, she had five blood transfusions and a platelet transfusion and she had two central line drips sewn into her chest as they struggled to find her tiny veins when trying to put up a drip. On top of all the 'normal' preemie complications, in a nutshell...she got a severe infection at a week old which they thought she would not survive, but she did. Her toes on her right foot turned black from poor circulation in the tiny blood vessels and we were told that she would probably lose her toes on that foot, but all her toes are all still there. Mackenzie then developed brain bleeds (Intraventricular Hemorrhage or IVH) on both sides of her brain because the blood vessels in such tiny babies brains rupture very easily. Unfortunately these did not resolve on their own and an obstruction was caused within her brain. This then lead to a fluid build up of Cerebrospinal fluid (CSF) in the ventricles within her brain and a condition called Hydrocephalus. Mackenzie needed a VP shunt to be placed in order to drain this fluid out of her brain permanently but she was too small at the time to have the surgery done and we needed to get her to a minimum weight of 5.5 lbs (2.5kg). While we waited for her to get bigger, the Neurosurgeon tapped fluid from her head in order to relieve the pressure that the Hydrocephalus was causing. This was done six times over a few weeks, by sticking a needle into the top of her head and drawing out the excess Cerebrospinal fluid. Mackenzie finally got to an ideal weight of 5.9lbs (2.7kg) and she had her brain surgery done at 3 months old, on 21 January 2014.
We arrived at the hospital on 8 February 2014 to finally take our miracle baby home, after 103 days in NICU, but we we shocked by a prognosis that we had not expected. We were called in by her Neurosurgeon and told that Mackenzie would probably not survive to be 8 months old and that if she did, she would be in a completely vegetative state, 80-100% blind and fed permanently through a tube in her stomach as her MRI revealed severe brain damage. Devastated by this news, we brought our other precious twin home to be with her family and we decided that we would not give up on her!
So, here Mackenzie is 5 and a half years later with Hydrocephalus, Syringomyelia a Cerebral Palsy diagnosis, Epilepsy and low vision amongst other things but she is a complete miracle!!! Her Hydrocephalus is monitored closely as VP shunts are well known for their complications (blockages, infections, etc) and she has two VP shunts now. Mackenzie also has two cysts within her spinal column and these are being monitored too in the hopes that they remain unchanged or resolve on their own without causing any further complications.
We are in the process of planning for Mackenzie to have SPML (Selective Percutaneous Myofascial Lengthening) surgery done in New Jersey as her left hip is completely dislocated and this type of minimally invasive surgery is utilized to relieve tension from muscle spasticity and by doing so, this should keep her comfortable and we can hopefully avoid more invasive hips surgeries in the future. We truly believe that this treatment will benefit Mackenzie hugely and we will do whatever it takes for her to have this surgery done! We can unfortunately not pay for the surgery on our own as we have to pay for it privately. We are thus trying to raise funds which will all go towards helping us pay for Mackenzie's SPML surgery and towards her ongoing post-op therapy thereafter.
We still don't know what lies ahead of Mackenzie, but she is doing really well for now! We will just keep trying our best as this little fighter does just not give up!!! All we hope to do is to give our little girl the best chance possible in life and to inspire other families like ours to never give up because we can kick Cerebral Palsy's butt!
You can follow Mackenzie's journey on Facebook under 'Miracle Mackenzie'
Thank you for all the love and support!!!
We have had to postpone her SPML surgery by a few months, as we are still trying to raise the funds needed to cover the costs of this procedure and the ongoing therapy that she will require thereafter.
Thank you to you all!