We’ve been married for almost 9 years. My husband has a son Kayden (my stepson) who is 11 and we have together a daughter Camila who is 6 and Amelia who is 10 months old. After Camila, we swore off having more children as Camila was born at 30 weeks and had to spend almost 3 months in NICU. However I think it was the 5-year itch we decided we wanted to have 1 more, we were devastated that we miscarried at around 10weeks. We were lucky enough to fall pregnant soon after. I was closely monitored weekly due to the risk of premature delivery and miscarriage. Pregnancy was normal and I felt great until 26 weeks, my cervix started to open and I was put on light duties. I managed to carry to my 34 weeks check-up and that is when my life changed. My OB told me my baby had a growth on its neck and measures around 3cm in addition to high blood pressure. I was booked in for an ultrasound that afternoon. By that evening I was booked in with specialists at the maternal-fetal and development centre. After many tests and ultrasounds, the growth was confirmed at 7cm and I was booked for c-section the following Tuesday. We were so worried what our baby would look like, how big the growth was, would it be cancerous and if our baby will survive.
17 December 2013 Amelia was born. She cried with was a great sign that she could breathe. The growth was so much more than we both imagined and we were lost on what to do from here. Amelia was immediately intubated and taken to the NICU. By day 2 we were given the all-clear of cancer and had the diagnosis of a rare condition called Lymphatic malformation. Which is the lymphatic system not forming correctly? Currently, there are no tests for this, however, from my research, she would have always had it but it obviously didn’t appear or grow until the 34-week ultrasound. We were told that was only 1 Case 12 years ago at the Royal Hospital for Women and treatment is unknown. We had the experience of NICU before but Amelia was a totally different experience. One great thing about being in the NICU, is that you meet wonderful families and support each other. Almost a year on and we are still in contact, we don’t talk regularly but when we see each other it’s as if we saw each other yesterday. We have an unspoken understanding.
Amelia was 4 days old when she had her first sclerotherapy surgery. Sclerotherapy is a treatment done under anaesthetic using ultrasound for guidance. I didn’t see any difference with the sclerotherapy at all, it only made her more swollen. It was very hard to see. We got a phone call one day while we were treating our other kids to a hospital free family day out. That ended quickly, they have to perform a tracheotomy surgery ASAP at just 4 weeks old. We again were a mess!
It was hard to see and accept, but now looking back, it was one of the best decisions to date. It has kept her alive and even saved a few extra hospital admissions as her airway was now secure.
Amelia has been having surgery every 6-8 weeks at The Children’s Hospital at Westmead…
Amelia’s specialist doctor is smart and compassionate and after finding him on a Lymphatic malformations Facebook support group, we were transferred here from Randwick and have never looked back. I trust him 100% with Amelia’s life. Amelia wouldn’t have a promising future without him.
Looking after Amelia is a full-time job due to her tracheostomy and feeding tube. Only my husband and I are trained to care for her and she has to have one of us by her side. We are 100% reliant on each other. I’m no longer able to work, which I miss a lot. My husband works for himself and owns a carpet cleaning business, so if he doesn’t work, he doesn’t get paid, so he’s working quite a bit lately.
Having a premature baby and now with special needs has changed our family significantly. It’s the constant worry about Amelia care, the added stress of being down to one income indefinitely, as well as caring for our other children.
While Amelia is in hospital, we live as single parents: I stay with her at Westmead and Hubby looks after our two other children, Kayden and Camila, at home.
Kayden is 11 and Camila is 6. Even though they get cranky that they are forgotten at times due to Amelia’s constant care, they love her very much!
To date, Amelia has had 10 sclerotherapy surgeries, 3 laser surgeries, tracheostomy, tonsillectomy, multiple MRI’s, 3 blood transfusions and uncountable general anaesthetics.
She is one tough cookie and has given us the true meaning of patience, compassion and love taking it to a whole new level.
Amelia spent 123 days in the hospital before she was allowed to come home for the first time and has since had 5 more hospital admissions. We know this condition is with her forever, it’s going to be a very long journey for our little princess. We are just very thankful that she is here and is being treated, in our opinion by the best doctors in the world!
Our relationship with each of these Doctors is built on trust and we have complete faith in them caring for our daughter.
For instance, one doctor came to us early on suggesting a drug called Sirolimus, it is a drug normally used for transplant patients. The doctor was aware they were currently trialling it in the US to treat Lymphatic malformation. We were asked if we would like Amelia to use it under trial conditions, we did research and asked a lot of questions and learnt that 85% of cases see a noticeable difference. The risks are there, it lowers her immune system so meant we would have extra bouts of illness on our hands. We said yes.
Within a day Amelia was put onto a 2-year plan using this drug under the trial conditions but here at The Kid’s Hospital. Within 2 months we saw a noticeable difference in her lymphatic malformation, they had reduced in size, however, the downside was she was hospitalised for a respiratory virus.
Our doctor went above and beyond and sourced financial assistance from the hospital to fund this for us as the drug wasn’t government funded for Amelia’s condition and would cost in excess of $600/ month.
Amelia would not have the life she has today without the wonderful doctors in NICU and children’s hospital. It’s a long journey and at times very tough but having our children with us makes it all worth it and I feel I’m a better person for it.