Freddie's Story
After 10 rounds of IVF we were thrilled when we found out we were finally pregnant. A couple of weeks later we were in the fertility specialists office having a scan to hear the heartbeat, and he tells us there’s two! Having a ready-made family after trying for so long was literally a dream come true.
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At the 20 week scan we were really excited to find out the genders, it was going to be a special day. We found out Twin 1 was a boy and twin 2 was a girl. Whom we ended up calling Freddie and Tilly. We were stopped just after being told the genders to say the  sonographer had found an abnormality on Freddies lung.  He was diagnosed with CCAM/CPAM  - Congenital pulmonary airway malformation. A condition where cysts are grown in place of functioning lung tissue. Unfortunately the cysts don’t grow how lung tissue should and can end up growing so large they can end up taking over the whole chest cavity. This put pressure on the heart , which can lead to heart failure, and hydrops and restricts growth of the good lung.
As the weeks went by Freddies condition deteriorated rapidly and we were told there was little hope of taking 2 babies home with us. We did 3 procedures on my pregnant belly to drain the largest cysts and try to keep Freddie alive. At this stage, the mass had grown so large that before each procedure Freddie was in heart failure as the mass was squashing the heart and it wasn’t able to function, Freddies movements significantly reduced and I could tell that he was really struggling.
 
In the early hours of the morning at 31 weeks I gave birth via emergency c section. It was a very quite and stressful birth. There were two neonatal teams waiting for the babies to arrive. I had been told that morning that Freddie would need at least 4 weeks of growth for his lungs to have any chance of survival at birth.
Unfortunately I didn’t have any baby cuddles,  Tilly was put on breathing support and taken straight to the King Edward Nicu (and transferred to Perth Childrens Hospital Nicu after 7 days). Freddie defied all odds and survived birth (what a legend), he was then ventilated taken to the King Edward Nicu and once stabilised was later that day transferred to Perth Childrens Hospital Nicu. I got to meet him briefly when they were transferring him to PCH.
 
He lasted 2 days until he deteriorated more and was taken for a lobectomy to remove the mass from his lung. At this stage he was 1.9kgs. This surgery was risky and he was unlikely to survive it. However the little guy came through, but he didn’t thrive, again he deteriorated and he underwent surgery again at two weeks old, the deal was the same it was a risky surgery and we sent Freddie off not expecting him to survive it. Amazingly the second surgery worked, although he still had a very long tough road ahead of him, he very slowly started to improve. He was still on all the pain meds, became addicted to morphine, didn’t like to be touched and screamed his silent ventilated scream whenever he heard his parents voices (this was all due to his pain levels). It was a really strange time, one hand we were so happy to be there, but it was also a bit of a nightmare to witness.
He was ventilated for 9 weeks, numerous times they tried to extubate him, but his airways couldn’t cope. In the end he required a balloon dilation by the ENT Team to stretch open his airways. Freddie was then put on CPAP, and rapidly went to high flow. At this stage we were really excited and there was talk of us leaving the hospital at xmas time (when Freddie would be 4 months old).
 
But this wasn’t right for Freddie and Freddie was in charge of his own timeframes. He was unable to come off high flow, his lungs and airways were just too weak to cope with low flow oxygen. Months past and the time seemed to drag, we were in the hospital 12 hours a day 7 days a week. I was so aware of how unbelievably lucky we were to be there, we had literally won every lottery, but it was tough.  Tilly had been discharged at 6 weeks and would daily come in to spend time with her brother. Most new mothers and babies get to spend quality bonding time a home. We did all of our firsts at the hospital.
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The day finally came! At 7 and a half months old (233 days as an inpatient) we got discharged, we had a hospital set up at home, we had an oxygen concentrator, stats monitor, high flow machine, tube pump for feeds and hospital in the home would make weekly visits, we still had a long way to go but we were finally home!
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Our little miracles are now almost 4. They are sassy, confident, funny, silly little souls. We had a tough start, but we are they very very lucky ones that made it through. I am thankful every day, that I have two wonderful little humans that make our lives so much fun.
HOW Lung Charity Support
would have been good...
As it mentioned before  being a lung warrior was tough, it was really tough.  Leaving our baby every night, that was so tough. Attempting to raise baby twins in a hospital and trying to keep your family ‘normal’, That was tough. Having to watch my little boy endure the horrible but necessary  medical procedures that’s just horrible, and something that no parent should have to go through, but we do.
 
Being a hospitalised lung patient is very lonely. Freddie was attached to the wall oxygen, so we couldn’t go for walks. It was very hard to leave the room to get food, or sunshine, or just a break. You would quickly wave to familiar faces in other rooms as you rushed by to get things done, so you could get back to your baby asap as you didn’t want to leave them alone for any more than you absolutely needed to.
 
Lung Warriors is an amazing charity, and will be an amazing support for all families going through a lung battle. During our stay I wished there was a community around us, someone to check in, and let us know that this is not forever and one day this would be a memory. Some sort of connection with others going through the same thing  There is nothing like this for lung families and this will be a huge support to help lung families ‘breathe easier’