Millie was born with a number of congenital heart defects, which were fully diagnosed after her birth. After a 19 hour battle during surgery and a six-month stay in hospital, which included her first Christmas, Millie is now doing well and meeting all her milestones. Her proud mum, Emma, shares their story:
(The photos in this story were taken by and belong to the author, depicting their family’s personal journey.)
Back in February, we raised some money for the Tiny Tickers Heart Week campaign. They supported us through Millie’s diagnosis and surgery via their online support group and family support pack.
I’m going to share some of Millie’s story and her diagnosis in hopes of raising awareness of congenital heart disease (CHD) and the importance of early detection, which Tiny Tickers is dedicated to increasing.
At our 20-week anomaly scan, we had one of the most difficult experiences of our lives. As I lay there with two sonographers going over and over our baby’s heart, the dead silence started to run through us with a feeling of dread until I finally asked if something was wrong.
We received an appointment for the next day with a consultant for another scan, and from there, we got referred to fetal medicine for a scan with a cardiologist.
After the third scan, the doctors took us to a side room and told us that our baby had a right aortic arch (RAA), which could be connected to a serious genetic disorder. Because of this, we were offered an amniocentesis test.
The doctors revealed that Millie could be born with something called a vascular ring and would, therefore, need scans when she was born to check for this.
At 30 weeks, we had a further scan, and everything looked good other than her right arch, and there was no obvious vascular ring, meaning she was unlikely to need an operation.
Fast forward to Millie being born, and after her scans at just under three weeks old, our world turned upside down. We discovered that Millie’s aorta was very rare, with a multitude of complications:
- Right aortic arch (aorta grew at the wrong side).
- Hypoplastic ascending aorta/transverse arch (underdeveloped aorta – severe and lengthy narrowing causing difficulty for the heart to pump blood around the body).
- Severe coarctation of the descending aorta (4cm – normal narrowing seen is 0.5 – 1cm).
- Gothic arch (arch came to an angular point rather than a candy cane – difficult for her heart to pump blood up and over the arch).
- Unusually high arch (aorta grew too high).
- Aortic circumflex (aorta swept from right to left down the back of her heart, causing airway compression).
- Vascular ring made up of a small left aortic arch and patent ductus arteriosus (arteries causing esophageal and tracheal compression affecting feeding and breathing).
- RAIV – retro-aortic innominate vein (very rare anomaly).
- LVH – left ventricular hypertrophy (enlarged left ventricular due to the pressure her heart was under trying to pump blood through her underdeveloped aorta to supply the body).
Symptoms Millie suffered from these defects were:
Poor femoral pulses, tachycardia (high heart rate), upper body hypertension (high blood pressure), lower body hypotension (low bp), difficulty breathing, swallowing and exhaustion when feeding, poor weight gain, weight loss, poor colouring, low temps in the lower body, severe sweating, and failure to thrive.
The combination of these defects made her anatomy very complex, requiring her surgeon to do some research and consult with other surgeons across the UK to ensure he took the right approach to repair her and fully reconstruct her aorta.
He told us that an adult would not survive what Millie had gone through.
There were three possible outcomes for her surgery, and the surgeon was hopeful that he could reconstruct her aorta with her own pericardium and avoid using artificial materials. Amazingly, this is what he was able to achieve during Millie’s 19-hour open heart surgery. Millie was placed on the bypass and had to have her heart stopped during her repair.
On that day – the single worst day of our lives – I carried our tiny five-week-old baby girl down to the theatre at 9am and lay her on a puffy, warm surgical bed. We watched the anesthesia send her to sleep, and at that moment, I felt a pain that only a small number of parents have felt.
We left the theatre room, and the rest of that day, other than the panic attacks, was a blur. The only thing that could get me through was being with our 21-month-old son, Harris. Phone call after phone call, we heard: “Call again in two hours” and, “There’s been a complication. Call again in two hours.”
Finally, at 11.30 pm, we were asked to head to the hospital. Upon arrival, we were escorted into a waiting room and told the surgeon would be in to speak to us soon.
Hours passed – Millie had a massive cardiac tamponade (bleed in the heart sac), and they had to go back into surgery.
Our miracle endured a total of 19 hours. During that time, her heart was stopped, with the ECMO machine keeping her body alive, plus cannulas into her upper and lower half – the cannula in her lower aorta caused it to rupture, meaning she needed further repair.
It wasn’t until 4am that we finally saw our baby girl. Nothing can prepare you to see your baby laying there, a strange grey/green colour, swollen to an unrecognisable extent, lifeless, with wires and machines everywhere, her heart visibly beating through a dressing, and four drains full of fluid and blood coming through her skin.
Seeing her heart beating was the most terrifying but the most reassuring sight. Millie’s chest was open for four days post-op, and she was on the ECMO watch list.
Finally, on Christmas Eve, her chest was successfully closed, and on her very first Christmas Day, the doctors attempted to extubate her and take her off of life support. We couldn’t wait to hold her for the first time in a week, but unfortunately, she failed extubation.
After many tests, we finally found out that Millie had suffered from recurrent laryngeal nerve damage during her open heart surgery, which resulted in bilateral vocal cord paralysis, where both vocal cords were stuck in a closed position. Consequently, her airway was too narrow for her to be able to breathe on her own.
Millie’s cardiac team stuck behind her and pushed for her to get checked by the ENT, who initially thought it was only Millie’s left cord that was affected. She had three different stitches inserted into her left cord to open her airway through an opening in the side of her neck.
Unfortunately, every stitch had failed, and Millie had a long recovery, narrowly avoiding a tracheostomy. She had a feeding peg placed, and from then on, she received feeds into her jejunum for some time to aid her growth.
Finally, Millie was well enough to come home after six months in the hospital.
Millie continues to suffer from bilateral vocal cord paralysis but is coping well at the moment with treatment when required. She is now thriving, meeting all her developmental milestones, and recently celebrated her first birthday at home with all her family and friends.
Millie’s team continues to support us extremely well, and we are regularly stopped by staff from all across the hospital when attending Millie’s appointments and told how amazing she looks and how well thought of she is.
She is our absolute hero. It is terrifying to think of what could have happened to Millie had her CHD not been detected antenatally. Although we didn’t have a full diagnosis, the diagnosis we did have meant that Millie had her echo and CT scan when she was a newborn, allowing her to be admitted to the cardiac ward to keep her safe until it was time for her surgery.
We are extremely grateful to Tiny Tickers for all the support they have offered us throughout the most difficult time of our lives and for the life-saving work they do in sonographer training and the placement of pulse oximetry machines.
Before Millie’s open heart surgery, during one of her many echos, the sonographer asked a colleague to come in to help her. The sonographer who arrived to help hadn’t previously met or scanned Millie; she didn’t even know her name before she began scanning. Yet, as soon as she placed the probe on Millie’s chest, she declared, “I’ve seen this heart before! The doctor had some beautiful fetal images of this heart a few months ago!”
We were blown away that she could recognise Millie by her heart! How many hearts do sonographers see daily?!
We are so amazed at just how unique and special our girl is.
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