Matthew

Matthew was born in 2013. He was born naturally and came 2 weeks early. He is my 3rd child and he has a older sister (Gabriella 6yo) and brother (Jonathan 4yo).

I had no complications in pregnancy and no signs of any problems whatsoever.

Matthew was a small baby when born and a very hungry baby all the time. At 3 days old I noticed that Matthew's stools were very pale and frequent and his urine was a very bright yellow colour. I found this strange, as this being my 3rd child I had never experienced these in my other children.

I raised the question with the many midwives at the hospital and they said it was ok because I was mix feeding breast and bottle and it may be all the vitamins in the formula. Baffled by this I took their answer and went home with my newborn excited about the times ahead.

At 3 weeks of age I noticed that he was a very unsettled baby and had a slight yellow tinge and his stools remained the same pale colour. I took him to my GP and she didn't think it was a problem and said that jaundice can remain in babies for up to 6 weeks of age. She took a stool sample and said he may be lactose intolerant and sent me home with a different formula can to try.

This made this worse and he was extremely unsettled all the time so I took him to a paediatrician. He told me the same thing as my GP,  basically I'm over concerned and that babies can be unsettled for up to 3 months of life and to relax. I didn't feel confident with that answer so I took him to another paediatrician and he said the same thing!  

At 6 weeks of age I went back to my GP completely exhausted and was preparing to give him his 6 week immunisations.  I told her that he was more yellow and very unsettled and then that's when she said to take him back to the paediatrician and that a blood test must be done.

The next day we went back and had bloods done and we found out that he needed to be rushed to the hospital because his liver numbers were not great and we were told to hope and pray it's not Biliary Atresia

Then the journey began...

After a week of testing we found out that Matthew had BA and we needed to do a kasai ASAP. The kasai was done at 9 weeks of age and we were given stats and they said it sometimes works and sometimes doesn't. Unfortunately 2 weeks after the kasai, ours failed. This was around Christmas ! So it was a very, very sombre Christmas!

 

We were told that Matthew needed a liver transplant to survive! This floored us and I am still recovering from that news!

We went through Christmas and New Year terribly and Matthew's weight dropped.  We were admitted for workup and were placed on the transplant list. In that time Matthew had ongoing admissions and tests and was relying on a feeding tube for nutrition and weight gain to keep him going until they found him a good liver to help him.

My husband and I got worked up with the possibility that we would become live donors and many times we wanted to go ahead with this option but we knew that this would burden our family dramatically and we had 2 other little ones to consider and they were already being affected with the major disruption in our family.

After the time on the transplant list, which felt like decades, we got the call one Saturday morning at around 9am and we knew our lives were about to change. Matthew was 10 months old.

We had so much fear and emotion it is hard to even describe what we felt, but the only thing I remember was saying to my husband we are sitting here waiting for our lives to change for the better and someone is in another hospital whose life has changed a different way and we cannot believe that in someone's most unimaginable grief they were so generous in their giving!

Matthew endured almost 12 hours in surgery and had a few hiccups after surgery but then recovered and has come such a long way since transplant! He is unrecognisable to many people as he is such a lively baby! He tries to keep up with his very active brother and sister and it's so incredible to know that we have our baby back!

We cannot wait to spend this Christmas together as a family and looking forward to a new year with many happy times ahead! We are forever grateful and thankful to our donor family because without their generous gift this Christmas would have been a lot different.