Baby Summer died from one of the world's rarest defects ♡

Baby Summer lost her life due to one of the world's rarest defects, please help support Sophie and Ian during this time of grief ♡♡

**For reasons unknown the Original Go Fund Me Page was taken down due to too many donations from unverified sources that have appeared likely due to the page being posted on Reddit - Sophie is so appreciative to everyone that donated on that page and please know these donations were received and have been put to the use they were intended for.

For those that are having issues with donating via Go Fund Me, please see the bank details below:

Commonwealth

Account Name: Donations for Summer

BSB: 067-872

Account: 2132 8933

For media or research enquiries, please contact me or Sophie directly. All media outlets must obtain prior consent to use any information or photos. Please respect the family's privacy during this time of profound grief.

After post-mortem investigations, it was confirmed that Summer had one of the rarest and most lethal defects in the world, with fewer than 200 cases reported worldwide in the past 125 years called Tracheal Agenesis. She also had a bronchoesophageal fistula and duodenal atresia. Sophie has a meeting in a few more months to find out more potential results. What we do know is that while Summer was never meant to be here on Earth, and we're unsure if this pain of losing her will ever become easier, she will forever remain incredibly loved by her mummy, daddy, big sister Indi, and big brother Archie.

“I carried you every second of your life and will love you every second of mine.'

I am posting on behalf of my best friend, Sophie Elson, who is beyond devastated to announce the loss of her baby girl, Summer Stewart, due to an incredibly rare and unexpected birth defect. The trauma that Sophie and Ian have faced during this time cannot be expressed in words – they have truly experienced the unimaginable. Sophie has been a big part of my life and helped me through some of life's toughest challenges for many years and while there is little I can do to help in this tragic time, I hope to ease any financial burdens with your help.

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Sophie and Ian have been so incredibly overwhelmed and thankful for all of the support they have received during this time. They have no words to express their appreciation for the kindness our wonderful little community here in the North West of Tasmania has shown and omlines l. Every donation, no matter the amount, will make a difference in helping Sophie and Ian navigate this difficult journey. All money raised will go directly towards the costs of Summer’s memorial garden and plaque at Parkside, debts accrued during the time of not being able to work, hotel stays, travel costs, child care debt, the possibility of looking into an inpatient PTSD therapy program for Sophie (which may be very costly), and anything remaining will be donated to the Genetic Alliance Australia (particularly to research VACTERL) and to the families who have also lost their beautiful babies: https://fundraising.rednose.org.au/find-a-tribute-pag

More details on Summer's Story Below:

Summer was born and passed away on December 27, 2024, at about 34 weeks old. Sophie had not seen her other children for weeks prior, including on Christmas, due to her emergency admission to the RHH.

During Sophie’s emotional rollercoaster of a pregnancy, she found out shortly after her 20-week scan that her sweet baby had a condition called VACTERL, which includes multiple defects and abnormalities of various body systems. Research at this stage has no evidence that VACTERL is genetic, but Sophie’s uncle passed away as a baby due to complications from the same disorder, known as VATER, back in the 1980s. This is very rare to happen twice in one family, so they suspect there may be a link that science is yet to discover.

VACTERL is, unfortunately, a group of defects that is very much on a spectrum, with the severity of the defects ranging from mild to life-limiting. Based on the extensive scans and fetal MRIs, everyone felt confident and fortunate that all of Summer’s abnormalities appeared ‘mild’ and that she would need maybe 1-2 surgeries in her early days after birth, then go on to live a relatively normal life. Each one of these scans was traumatic, as they felt as though they held the quality of her little life in their hands.Despite having some complications and traumatic births with her previous two children, Sophie continued working until the late third trimester. This time, Sophie was so physically and mentally unwell during this pregnancy that she had to quit her job of almost 10 years and give up on her dream job of helping those struggling with ADHD/Autism. Even with the incredible opportunity to work from home, her pregnancy became so high-risk that she had to start traveling 4.5 hours every 1-2 weeks to the closest specialist hospital in Hobart for appointments, including multiple a week in the North West. Sadly, she was unable to commit to this job and missed out on any parental or bereavement leave entitlements due to her career break caused by the complications.

Sophie had one of the worst cases of Polyhydramnios that specialists had ever seen. At 27 weeks pregnant, her stomach was measuring at 42 weeks. She was admitted to the Royal Hobart Hospital due to the impact the excess fluid was having on her organs, requiring catheters, lots of tests, and heavy amounts of frequent opioids to help with the pain. (She is still now trying to taper from these medications, as well as a large amount of benzodiazepines to assist with her grief and is looking into an inpatient facility to help with both these and her panic attacks from PTSD, not only from this but from many prior unfortunate events Sophie has faced during her lifetime.) Despite having a traumatic and painful amniotic reduction (the first one performed in Tasmania for over two years), with 2.5L of fluid removed, the fluid came back quickly and even worse.

Sophie was in labour for weeks straight and in active labour for an entire night without realising it, because her pain had been so severe for so many months that even at 8cm dilated, she had become tolerant to the pain and was unaware. The birth was very high-risk for cord prolapse and placental abruption, but thankfully everything went well. Unfortunately, when Summer was born and her cord was cut, Sophie and Ian already knew they were facing the worst-case scenario. Sophie explains that, while she doesn’t know how, perhaps through ‘motherly instinct,’ she could feel that her baby was already gone at that point.

Summer was rushed off to the NICU immediately. She had over 20 of the most incredible neonatal specialists looking after her and doing all they could. Despite their efforts, Summer was unable to be intubated. She fought hard with a strong heartbeat for as long as she could, until it became unfair to continue trying, as she had been in respiratory distress for too long. Summer was able to peacefully pass in Sophie and Ian’s arms ♡