Let's make Wren's Way an official charity! Let's raise 5K!

CONNOR, ELLIE, THEIR FAMILY AND FRIENDS WILL BE WALKING A WHOOPING 73 MILES FROM THEIR HOME IN HAYDOCK TO SNOWDONIA NATIONAL PARK AND THEN UP SNOWDON. WE WILL BE STARTING ON MONDAY 11th AUGUST AND HOPE TO CLIMB SNOWDON AND FINISH ON SUNDAY 17th AUGUST 2025.

Wren’s Way has been an idea of ours since the day our daughter was born as we felt there was not enough awareness of women who go through difficult pregnancies and babies who are born with complications and cannot go home straight away. Wren fought for every minute she had with us and we feel it’s only fair we fight to make a difference for other families experiencing what we did.

Here is Wren's story:

After a complicated pregnancy, Wren was born at 33+2 weeks at Liverpool Women’s Hospital. She was born at 3lbs 11oz. There we spent 74 days going through a rollercoaster of emotions, heartache and cherished memories. Wren was intubated from birth as she was born prematurely and her mums waters went early. When we arrived on to the NICU, the consultant immediately told us she was concerned about Wren and was worried she would not make it through the next couple of hours. Wren heard the conversation and decided this was not going to be the case! A week into Wren’s life, she needed her tube changed as she had outgrown her first tube. This is normally a straight forward procedure. Unfortunately for us, it was one of the scariest moments of our entire journey and Wren had to be resuscitated. Following this, Wren was sent for various scans where they found that she had tracheal stenosis and an extra bronchus. This causes a narrowing of the windpipe and means it would be very difficult for Wren to breathe without support. We also found that she had multiple ASDs and VSDs. These are holes in the upper and lower sections of the heart. She had a left pulmonary artery sling causing higher pressures in her heart and lungs. Just when we thought Wren had enough to fight, we found out her right hip was dislocated too. We never left her side for the next 8 weeks, living in hospital accommodation anxiously hoping the nurses wouldn’t ring us throughout the night. We spent Christmas and New Years Eve in the NICU waiting for a call from Great Ormond Street who would operate as this is where the specialist surgeons were based for tracheal and cardiac abnormalities. Wren was transferred to GOSH on the 13th January .

For the next four months, we watched Wren go through three major surgeries. The first one in January, only 4 days after arriving at GOSH to fix her trachea and LPA sling. This was a bypass surgery and was very high risk for a baby of Wren’s size. This was a very tricky for the surgeons and Wren had to go on the bypass machine twice in order to complete the surgery. The surgery in total was 7 hours long and it felt like the longest day of our lives⏳. Wren came through with flying colours and was extubated twice afterwards. However, Wren only lasted a total of 30 hours off the ventilator and it became clear she needed another surgery but this time to fix the holes in her heart.

In March, Wren went back down to theatre and underwent her second bypass surgery. Again, this was a very risky surgery and we prepared ourselves for Wren to be very poorly during recovery. What we didn’t expect was for Wren to have complications with bleeding down in theatre and she was down for longer than we had anticipated. After another 7 hour long wait, Wren came back up to ICU in a stable position and we were relieved to know that the holes in Wren’s heart had been fixed.

After the first surgery Wren suffered with chylothorax. This is where fluid is leaking from the lymphatic system into the chest space and this can make it very difficult for her lungs to expand as they should. You have to be very unlucky to get Chylothorax as there is a 3% chance you can get this. Quickly after the second operation we were told that Wren has the same issue again! Little did we know this would continue for 7 weeks. She was losing 500mls a day of fluid from her chest drains. This was very hard for Wren as she was losing a lot of nutrients and proteins that her body needed. Because of this, the doctors would replace parts of the fluid she lost but it would sit in the wrong areas and she would become uncomfortable and swollen quite often.

To get one of the chest drains out she underwent a bedside surgical procedure called pleurodesis. This helps the lung stick to the chest wall and it would mean she could no longer build fluid or air up around her lungs. Wren had a really bad inflammatory response to this and became very unstable. Despite this, the fluid loss did not slow down and it became apparent she would need a 3rd operation to try and resolve this for her to move forward.

In May, Wren went down for her third and final procedure. This time it was not a bypass operation but this was the riskiest of them all. She needed thoracic duct ligation. This is where they block off part of the lymphatic system to stop her draining the fluid but she also needed another pleurodesis. Before the operation we were given a 50/50 chance Wren would survive the recovery process but we had no other option to move forward. Up until this point we had never denied Wren the chance to show what she was made of and this time was no different. Ourselves and the medical staff believed this was the best thing for Wren. The surgery went very well and Wren came back up in a good position. We were tense thinking about what was coming in the next couple of days as we knew the inflammatory response would kick in we just didn’t know when. Wren did well for 24 hours however, after this it was clear she was becoming unwell as the level of support continued to increase. We felt helpless but we knew to get through this we needed Wren to fight. From day one all Wren ever did was fight but this time it felt to everyone that this could be too much.

In the next coming days, Wren deteriorated and we had many chats with the consultants expressing their concerns. Palliative care were now involved as we prepared for Wren’s final days. Our families hurried down to see Wren and support us as a family. On Friday 16th May, we nipped back to the flat for some tea before the night nurse in charge rang us to express how worried she was about Wren’s condition. Both of us had a gut feeling this wasn’t going to be a good night but we rushed back to the hospital to be there for Wren. As the night went on, the consultant, doctors and nurses gave everything they could but Wren had stopped responding to the medicines and her blood pressure was sitting too low. They sat us down and at that point we knew it was time to stop fighting. For six and a half months, we had tried our absolute best to understand Wren’s complicated anatomy, symptoms, medicines and even built up the courage to question consultants when we believed they were wrong but at this moment we knew Wren was telling us she needed to rest. During the following hours, we spent time together and Wren passed away peacefully in our arms. This was one of the most heartbreaking moments of our lives as we wished things could’ve been different and Wren didn’t deserve any of this but in the back of our minds, we felt relief our little girl would no longer have to fight for her life. We are so thankful for all the memories we have as a family and will always be proud of how we stayed positive throughout this whole experience.

We would like to thank Dr Muthialu, who gave Wren the chance of life and never gave up on her. The endless consultants, doctors and nurses who cared for Wren. A special thanks to the CICU physiotherapists at GOSH that helped us to do ‘normal’ baby things such as using a bouncer or getting Wren out for cuddles. Music therapy was a highlight of our week at Great Ormond Street! We would like to acknowledge all of the amazing families and children we have met on our journey. All of who have unbelievable strength, determination and kindness! Finally, we would like to thank our own family and friends. We are constantly reminded how strong we are as parents but we wouldn’t have got through this without such a supportive family behind us.

Wren may have been small but she was definitely mighty and will always be remembered for her strength and resilience.