My wife wanted a baby but got a death sentence

Melissa, Paul & Miles
Melissa, Paul & Miles

“I’m pregnant!” screamed my wife Melissa, running over and throwing her arms around me.

It was April 2007 and I’d been married to my sweetheart Melissa for a year.

“I can’t wait to have a family,” she beamed. “It just feels so right.”

I agreed. We’d been dating for seven years before we married and babies were on both our minds.


Melissa, Paul & Miles
Melissa, Paul & Miles

“Now you’ll have a baby to spoil instead of all those puppies you pamper,” I joked, since Melissa worked as a dog groomer.

“Oi, you’re just as bad as me,” she said, “cooing over babies in the street.”

We were so happy that there was a dance in our step as we went to the 12-week scan at Addenbrooke’s Hospital in Cambridge.

As the ultrasound glided over Melissa’s little bump, I laughed at the image on the screen.
Our baby was holding its head in its hands and its legs were crossed.

“Looks like it’s either chilling out, or desperate for a wee,” I said.

“Paul!” chided Melissa playfully, “stop being silly.”

But when the obstetrician came in looking concerned, she wiped the smiles right off our faces.

“I’ll need to go over your medical history,” she said. “Because of your tuberous sclerosis.”

“Tuberous what?” said Melissa. “I don’t know what you’re talking about. Surely someone would have mentioned this?”

“Well, you ought to make an appointment to discuss it with your GP,” said the obstetrician.

Days later, our GP sat before us exclaiming: “I just can’t believe you haven’t been told!”

As we sat there stunned, we discovered Melissa had been diagnosed by a neurologist in 2003, but due to a clerical error, she was never told.

To make matters worse, Melissa was also suffering from a rare lung disease called lymphangioleiomyomatosis (LAM), a condition which causes excessive growth of muscle tissue that progressively erodes the lungs.

Melissa’s wedding day

Clutching each other’s hands, it felt like our nightmare was only just beginning.

“The pregnancy might accelerate the rate at which the disease attacks your lungs,” our doctor explained apologetically, “so you may want to consider an abortion.”

“That sounds like a big ‘might’,” said Melissa, “and I’m not prepared to lose my baby because of something which might never happen.”

After seeing the scans of our baby, the idea of an abortion repulsed us both.

But with Melissa’s health hanging in the balance, we spent the night thinking about the doctor’s warning.
I wanted a child more than anything, but I was worried sick about Melissa.

“I’d rather have you than just have the baby,” I said.

“You don’t have to choose! It won’t come to that,” Melissa replied. “They said the LAM was only mild to moderate and if I’m on medication then I’ll be fine.”

After we made our decision, the doctor advised us that the baby would need to be delivered early by caesarean section, because Melissa would never survive a full term pregnancy.

During the pregnancy, Melissa had the baby pressing against her lungs.
It must have been agony, but she never complained.

I became used to seeing Melissa housebound with a tube attached to her nose which led to an oxygen tank to help her breathe.

But despite this, she still looked stunning.

When the appointment for the caesarean arrived, Melissa was relieved and at 29 weeks our baby boy was born.
As doctors cut the umbilical cord, I just welled up.

Melissa was smiling and had a healthy glow in her cheeks.

I couldn’t remember ever being so happy in my life.

“It’s much easier to breathe now,” sighed Melissa.

On November 1, we cradled all 3lbs 1oz of our son.

We decided to call him Miles, an anagram of Melissa’s nickname – Melis.

For the next few weeks Miles was kept inside an incubator until we were able to bring the little rascal home on Sunday, December 23, 2007.

“We’re a real mummy and daddy now!” I said to Melissa.

“I know, it’s amazing isn’t it?” she exclaimed.

But the joy of Christmas 2007 was short-lived.

In January 2008, Melissa discovered her condition was getting worse and she would need a double lung transplant.

If no donor was found, she would have less than 12 months to live.

We’d been blessed with a new life, but now we were facing death.

My worst nightmare had come true.

“What if I never live to see Miles speak his first word or take his first step,” sobbed Melissa.

“Come on now, we’ve got to stay positive,” I said.

“I know,” said Melissa. “but Miles is the best thing that’s ever happened to me and I can’t bear the thought of not being there for him,” she said.

In April 2008, Melissa went to the Freeman Hospital in Newcastle where doctors assessed whether she was suitable for a lung transplant.

The outlook was optimistic – Melissa had the most common blood group and could accept lungs from either a male or female donor.

“If a pair of lungs becomes available, you’ll need to be ready. Remember, this could be at any time of the day or night,” advised the doctor.

We kept an overnight bag by the door, just in case Melissa had to be rushed off to Newcastle for the operation.

Anytime the phone rang, we raced over to answer, only to be disappointed when it was a telesales call.

But brave Melissa never lost hope and kept upbeat.

After all, she was a mum.

When Melissa lay in hospital, Miles gurgled away in his cot at the end of the bed.

It was impossible to feel sad for too long with Miles around.

Five months after joining the transplant waiting list, in December 2008, Melissa was starting to worry that a donor would never be found.

“This has gone on for too long,” said Melissa, who had endured months of painful procedures to keep her lungs free of fluids.

Her lungs were like tissue paper and putting in a chest drain felt like a razor blade.

“It just feels so barbaric,” said Melissa, surveying her body which looked like it was riddled with bullet holes.

“I don’t think I can take it anymore,” she said, crying in my arms.

It was Christmas Eve 2008 and Melissa made the painful decision to take herself off the waiting list and opt for palliative care at Addenbrooke’s Hospital in Cambridge.

As she lay in the hospital bed gazing at me warmly, I could feel her reaching out to me.

She’d put up a fight, but her body was defeated.

There was no way she would survive a gruelling lung transplant even if an organ became available.

After Melissa made the decision, I sat there, sensing her relief.

But I was devastated.

The day had finally come when there was no more hope to hang on to.

I understood that Melissa could not go on anymore, but I kept my thoughts to myself.

I didn’t speak, but just held her hand.

I couldn’t bear the thought of Melissa battling through any more operations to keep her lungs inflated.

Recently, she’d endured as many as three painful operations a day.

In my heart of hearts I knew Melissa would be gone soon, whether she took herself off the waiting list or not.

For her, it was too late.

Now I just wanted her to spend her last days in peace.

When the doctor asked her how she wanted to end her life, I just burst into tears.

“You’ve got about a week left,” said the doctor.

“I can’t believe this is happening,” said Melissa.

She was tired, and I could tell our time together was running out.

With tears running down my face I got out a pad of paper.

“I don’t know how I’m going to manage without you,” I said.

“And Miles – he’s going to miss his mummy so much.”

“Is there anything you’d like me to do with Miles…in the future?” I asked, unable to utter the words, ‘when you’re gone.’

“No, no. Don’t be silly – you’ll be fine,” she said, reassuring me that her parents Christine, 60, and Frank McAteer, 65, would be there to help out.

“Just don’t let Miles forget me,” she said.

I stayed by her side day and night, listening to her breathing, while Miles stayed with his nan and granddad.

As Melissa slept, her breathing began to slow right down and when it stopped, I knew she was gone forever.

On December 28, 2008, Melissa passed away as I held her hand and whispered words of comfort.

I was heartbroken, but I didn’t have time to grieve.

There were nappies that needed changing, mouths to feed.

I’ve found it hard – nursing a baby didn’t come naturally to me.

I just wish I had someone to tell me I was doing things right.

Whenever Miles smiled it reminded me of Melissa.

She was always so positive – even in the face of adversity.

Concentrating on fulfilling Melissa’s dying wish, I made a memory box for Miles.

It contained his first pair of socks which were so tiny they’d fit on the end of my little finger, and some photos of Melissa, from me proposing in Australia to Melissa changing Miles’ nappy.

Throughout the pregnancy I wrote a blog about what happened to Melissa, which I published and made into a book so Miles can read it when he’s older.

Miles, now four, sometimes asks: “My mummy’s dead isn’t she?”

How do I explain that a transplant would have added 10 years to his mum’s life?

I just want people to think about signing the organ donor register.

It’s amazing to think how much Melissa fought just to be with us and I hope that by telling her story I can encourage more people to think about donating.


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