“Our Strong Fighter Amelia”

 In MCC Ambassador, News

 

“My husband Amar and I had long dreamed of being parents”.                                                                                           

Finally, after our second IVF treatment, we learned we were to be parents not only of one baby, but of two! We were over the moon and the next eight weeks passed blissfully. But suddenly I had some bleeding and, having experienced this before, Amar and I rushed to hospital for an emergency scan, fearing the worst. We were told that the heartbeat of one of our precious babies had stopped, but that the other baby had survived. What a mixture of feelings we had as we drove home that day! We were devastated to have lost a child we had longed for.

That day we made a conscious decision to be grateful for the precious and strong baby that survived and was still thriving in my tummy.

Over the next few months, I enjoyed every moment of my pregnancy. I absolutely loved that indescribable feeling of my beautiful baby growing inside of me, after waiting so long to become pregnant. My sisters planned and surprised me with the most amazing and special baby shower on a beautiful, sunny July day. The day was filled with glorious weather, lots of games, fancy foods and a lovely bar, courtesy of the cricket club hosting the event. It was so special to have all of our close friends and family there to celebrate the imminent birth of our baby. Amar and I felt so very lucky that day, to be welcoming our precious baby surrounded by so much love and support.

Soon after, Amar and I went for our scheduled 30-week scan. This was just a formality by now, as everything had been going swimmingly and there had been no cause for concern. I had been informed at previous appointments that my chances of having a baby with Down Syndrome were 1:6,000. So as Amar and I walked into the scanning room, we were feeling excited to see our baby again on the screen. The sonographer took a little longer than usual, but we didn’t think anything of it. After the scan was done, she took us into another room and explained that our baby had an intermittent absent heart rate and that it would be best for me to spend the night in order to receive steroid injections over the next two days to prepare our baby’s lungs in case I needed to deliver early.

I was shocked, and confused. I hadn’t brought anything with me for an overnight stay! So many “what-ifs” went through my mind. Thankfully, Amar calmed me and assured me it was just a precaution. Two days later, after having the injections, I was told that the baby was safe enough for me to go home. So I did, and set about enjoying the rest of my pregnancy. I faithfully practiced hypnobirthing through the DVD I had purchased, and looked forward to experiencing all the sensations of bringing our precious baby into the world soon.

Spring turned to summer, and Amar and I continued on with life as usual. As much as we had worried at 30 weeks that our baby might arrive prematurely, at four days past due Amar and I were desperate to finally see him or her! One day, Amar suggested that we go for a long walk in the hopes that it would get things moving. When we finally returned home, I was exhausted and went upstairs to lie down. As I settled, I started to think about the baby’s movements I had been feeling and realised that it had been over an hour since I had felt anything. Not wanting to worry Amar over possibly nothing, I went downstairs, poured myself a freezing cold glass of water, and drank it all down. I lay down again, willing baby to move just a little to show me everything was okay. After still feeling nothing, I went and told Amar what was happening. I knew he would want me to go to hospital and I really didn’t want to go through a wasted journey, waiting uncomfortably in triage for something that might just be normal. Baby was probably just snoozing!

Of course, after all that water, it wasn’t long before I needed the loo. I went to the toilet and as I stood up, I realised that I was bleeding. Immediately I thought, “Oh no, not again!” and, sobbing, opened the bathroom door to find Amar waiting outside. My hands shook as I dialled the triage department at our hospital and was told to come in immediately.

We arrived at the hospital minutes later, and a nurse checked me over and said that I seemed fine and that baby was okay. She explained that they would keep me hooked up to the baby’s heart monitor for an hour and, if all was okay, I could return home. By this time, I was having sharp pains in my tummy now and again, but I was assured that they weren’t contractions and I wasn’t in labour. After an hour had passed, two nurses came in and started to write up my notes so that I could be discharged. As soon as I stood up again, the blood started pouring and the line on the heart monitor graph declined sharply. The nurses rushed out and returned with a consultant, who said we would need to go to a delivery room. I was a little nervous, but mostly excited that I would finally get to meet our baby!

A lovely midwife came into the delivery room and explained that my waters would need to be broken to start labour. Three different nurses tried to break my waters, unsuccessfully. Each time, I felt excruciating pain, but they insisted that they had not managed to break my waters and that they would need a consultant to do it. The consultant came in and I will never forget the pain I felt as she tried to once again do what the others had failed at. Finally, the consultant looked up at me and said,

It appears that your waters have already broken some time ago, and the baby has passed meconium inside you.

Then, she left.

The midwife then asked Amar to put on hospital scrubs as a precaution. As a complete novice to all this, I remember thinking, “Why does he need to wear those?” Then it dawned on me that,

 I wouldn’t been having the perfect labour I had dreamed of, bouncing on the gym ball and showing off the hypnobirthing techniques I had spent hours learning on DVD throughout my pregnancy.

Instead, I would be stuck in this bed, hooked up to a heart monitor, when I met my beautiful baby for the first time. The next thing I knew, the midwife rushed in and told me I would need a C-section and she would take me immediately to the operating theatre; Amar could join me once I had been prepared.

As someone who thrives on being in control, I was terrified. Quickly, I was wheeled into theatre and transferred to another bed. Lots of friendly people around the room introduced themselves to me, but at that point I could barely focus. My body was shaking uncontrollably, and I felt freezing cold. The spinal block was inserted into my back, and they lay me down. Everything seemed like a blur, and it still does to this day, to be honest. I try not to think about it too much because, although the medical professionals did an amazing job that day, this wasn’t the labour I had dreamed of throughout my pregnancy. I remember Amar sitting next to me, holding me, and constantly asking if I was okay. I remember silently crying. After what seemed like five minutes, I felt some rummaging around inside me and my baby was here!

My heart honestly felt like it stopped. On every television program I had ever seen, you always heard the baby cry when they were born; that’s how you knew it was okay. But my baby wasn’t crying. Why??? And why did they rush the baby over to the other side of the room? And why were they all crowding around like that? And just then I heard the cry — I can’t explain the relief that washed over me at that moment. I thought, “That’s it! Baby’s here! Everything is okay!” One of the medics called Amar over, and I heard my husband’s voice say, “It’s a girl! She’s a girl!” I had been so certain that I was having a boy — every single person at my baby shower predicted I would have a son — that having a girl hadn’t even crossed my mind. I was overjoyed! Amar came over and held our baby close to me so I could see her for the first time.

She was tiny and oh, so beautiful! She even had my almond shaped eyes.

I spoke softly to my little girl, and couldn’t take my eyes off of her.

A short while later I was wheeled into the recovery area. I had tea and some toast while I glanced over at the doctor doing her checks on our baby on the other side of the room. I noticed that she was picking my baby up quite sharply, again and again, with my baby’s head rolling back each time. I remember thinking, “Stop doing that! Her neck is not strong enough yet.”

The lovely midwife brought baby over to me and explained that baby’s temperature wasn’t regulating like it should, and that some skin-to-skin contact with me might help her keep her temperature up. I thrilled in those few precious moments holding my beautiful girl against me. She moved to my breast and started to try and drink from me. That made my day! After a few moments the doctor came and took her from me, explaining that they needed to put her under some lamps to get her temperature up. Filled with the warm and fuzzy feelings I had after holding my baby, I handed her over, softly telling her that I would see her later. I asked Amar to go with her. I didn’t want her to be alone.

As Amar later shared with me, he followed our baby as she was wheeled out of the recovery room to another area of the hospital. He was asked to sit in a waiting room, where he stayed for over an hour, falling asleep in his exhaustion, poor guy. He was woken by a nurse who had come to get him. As he turned the corner from the waiting room, he quickly realised that he was in intensive care. Approaching our baby, he saw that she was in a closed cot. There were tubes and wires everywhere! The nurses explained that our baby needed oxygen to help her breathe, but before Amar could wrap his head around what he was experiencing, the door was pushed open and I was wheeled in. Both of us watched our precious baby, completely speechless. Yes, she was lying there, looking almost lifeless — but still hanging on.

Over the next couple of days, Amar and I were a bit clueless. We knew our baby was seriously struggling to breathe, and we made sure that we were by her side in NICU at every possible moment so she would know that we were there with her. We also came to realise, as we walked all the way to the far end of the corridor for our visits, that our baby was in the highest-severity room of the neonatal unit. Thankfully, our families came to visit, excited to meet our little girl. If they were worried about anything, they didn’t show it, and they were strong for us — there were no tears, no sad looks, just pure joy at meeting the newest addition to their family. We will always appreciate them for that.

The reality was, there was nothing that we could do for her. We couldn’t make her better and take her home. It was out of our hands. The one thing I could control was enabling our daughter to benefit from my breast milk, so I became a breast milk machine! I expressed milk every two to three hours, like clockwork, setting my alarm throughout the night, waking up, expressing, sterilising and getting everything ready for the next session, again and again. Little did I know this was only the beginning.

On our baby’s third day in neonatal, for what felt like the millionth time, doctors came in to study our daughter, her hands, her feet. They spoke in hushed voices and then left. Later that day, the consultant came in and asked if he could speak to us. He took us into a side room just off the reception area. Amar noticed that the accompanying nurse carried a box of tissues with her.

The consultant started off by saying that they had performed lots of tests, they found that baby’s brain was fine, her heart was fine….I started to think, “She must be well enough to come home now!” He sounded so positive I was convinced that he was going to tell us she was all better and we could take her home. Then he spoke his next sentence: “We have a suspicion that your baby has Down Syndrome.” I thought, “What? How….?” I had stopped listening at that moment and had a million thoughts running through my mind. The consultant told us that our baby’s blood had been sent off for confirmation, but that the doctors had observed a number of markers and believed that our girl had Down syndrome.

Together, we walked out of that room and back to our beautiful baby. I sat, watching her in silence, while Amar started to Google “Down syndrome markers.”

My husband said, “She has it. I know she has it,” as he too started examining our daughter’s hands and feet.

The next day, Amar and I were taken to that very same room, where the doctor confirmed that our beautiful little girl had Down syndrome. He handed us a flimsy sheet of paper with an article from the Down Syndrome Association on it. We didn’t even look at it. We honestly hadn’t begun to register the diagnosis at that point. I knew nothing about Down syndrome, and had never come across anyone who had it. I was crying, but I didn’t even know why. Amar and I had just wanted our little girl to be healthy, to be able to breathe on her own. We never even thought about Down syndrome, not for a moment.

My husband and I left that little room and walked back down the long corridor. We stood next to our precious baby girl in her cot. Amar finally broke the silence and said, “Let’s name her.” Our memories scanned the short list of six or so names we had discussed, and at the very same time we both said, “Amelia. Let’s call her Amelia.” It had been on our list because we both felt that it sounded a bit Indian whilst still being an English/European name.

Later, we learned that “Amelia” means “industrious” and “strong,” perfect descriptors for our fighting girl.

But honestly, at the time, she just looked like an Amelia to us. The name chose her, really.

 

 

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