Baby with heart disease on ‘borrowed time’ as Brighton mum fears the worst

A mum-of-two has shared her heartbreak after her baby wasn’t born breathing due to rare heart disease and says her little girl is now on “borrowed time” due to “unknown” future ahead.

When Samantha Sargent fell pregnant with her second baby, she and her husband, Mo, 28, along with their little girl, Imaani, six, were overjoyed.

But at 20 weeks, the now mum-of-two started to fear the worst, as she recalls being the same size as a full-term pregnancy, where medics said her baby was at “high risk” of being born too prematurely.

At 37 weeks, after an emergency c-section, little Willow entered the world, but panic started to set in as the plucky tot wasn’t born breathing and was taken to have life saving heart surgery only hours later.

Now, the mum, aged 26, is sharing her baby’s harrowing battle in a bid to raise awareness for a condition which has “robbed” precious time with her newborn.

“I heard the doctor say my little girl couldn’t breathe and that her skin was a mottled-blue colour – I thought I had already lost her,” Samantha, a stay-at-home mum from Brighton, told NeedToKnow.co.uk.

“I cried as she was quickly whisked away to intensive care and I wasn’t allowed to see her for the next 24 hours, which was agony.

“I kept thinking about what was wrong, but no one could give me any straight answers.

“Then, the doctor came to see me with devastating news of her diagnosis.”

Samantha claims nothing was detected throughout their routine scans and assumed she would be delivering a “healthy” baby – but it quickly became clear this wasn’t the case.

After an x-ray and ultrasound, Willow was diagnosed with severe pulmonary stenosis, a disease which affects the flow of blood to the heart and lungs.

While shocked, the mum didn’t have any time to think, as doctors informed the family that she needed to be transferred to Evelina London Children’s hospital for keyhole heart valve surgery straight away.

Samantha claims without the procedure, there was a high risk of her daughter not making it through the night, which she couldn’t bare to think about.

She said: “I tried to keep my cool, although I was terrified about the outcome.

“If she didn’t have the surgery then and there, she wouldn’t be here for much longer and I knew I had to keep any emotions to myself until she was in the clear.”

Luckily, the surgery was a success, but the following few weeks presented another issue, as Willow was unable to suck, feed or swallow.

Soon, medics found a laryngeal cleft, an abnormal opening between the larynx and oesophagus, which causes food and drink to end up in the lungs.

Due to this, Willow kept being sick and her weight was quickly decreasing.

But now, she’s on a special type of milk which is fed through her nose into the intestines and when she reaches 8kg, another operation will be carried out to help keep the food down.

Currently, she weighs 6.9kg and will require another valve surgery at 11 months old, followed by a final one in her teenage years.

Now, while the family are unsure what lies in the future for their little girl, their hearts have been warmed after seeing how happy she makes their first born, Imaani.

She added: “At three weeks old, Imaani was finally able to meet her sister and it was such a joyous and happy moment.

“She’s been so patient and gentle and has since made Willow gifts such as cards and paintings to take to the hospital.

“Whenever she can’t settle, Imaani takes over and sings her to sleep – it’s been magical.

“I hope I can raise awareness with my little girl’s story and warn people that this congenital heart disease can affect anybody.

“Sometimes, like in our case, it comes without any warning or knowledge until they’re born.

“I do worry about how she will grow up in the future and how this condition will affect her mentally and physically.

“But, no matter what, I know she’ll always have her sister by her side to aid her in any battle life throws at us.”