‘Are you sure about having this baby?’ He was as blue as a Smurf. I walked down the corridor, empty, without my baby.’: Mom shares son’s journey with congenital heart defect, ‘It made me who I am’

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“This is a story about me and my beautiful baby boy’s early life and how I had to grow up at 20 when reality hit home and I had an amazingly special child. This topic is very close to my heart and has actually taken me a long time to sit and write it, but I had this sudden urge to share my journey not just for myself, but for so many young moms experiencing life with a special needs child.

In 2012, I started my university degree in education studies. I was grateful to be attending university more so because of my Somali mother, who wanted a daughter with a degree. Towards the end of my first year, at the beginning of 2013, I fell pregnant with my firstborn. I was 19 at the time. I was smacked with a ball of emotions. An overwhelming feeling comes over you and I was anxious, scared, nervous, and very excited.

Courtesy of Ayylifee

At 12 weeks, I had my first scan. The radiographer told me, ‘There is too much fluid behind your baby’s neck.’ Being my first baby, I was thinking a million thoughts. The radiographer didn’t give me any ideas what that even meant. Google became my best friend. I started doing crazy research, which wasn’t a great idea, as all I kept seeing was RED. I had all the worst thoughts in the world.

After a long period of overthinking about what it could be, they sent me for another appointment for my 16 weeks scan. They told me, ‘Everything is perfectly fine. There is nothing to worry about. There’s enough fluid behind your baby’s neck and your baby has everything it needs at this stage.’ I left the hospital 16 weeks pregnant thinking, that’s amazing because when I first left the hospital, I left in devastation wondering, ‘What health problems will occur? Is the baby okay? Am I going to be okay?’ All those crazy thoughts went to the back of my brain. I just wanted to be in a positive mindset.

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I was 28 weeks pregnant when, suddenly, I got a phone call from the hospital, saying, ‘You have a scan booked in at Great Ormond Street Hospital for the baby.’ I thought, ‘Wow, GOSH? There must be something wrong they ain’t telling me.’ I went to great Ormond Street with my sister and she was more dramatic than I was, as I didn’t know I was about to walk into news that would change the rest of my life. She grasped our surroundings and noticed it was serious. She was a lot more receptive to the environment whereas, I just wanted to go with the flow as I had no idea what was going on.

As I laid on the bed in the ultrasound room with my sister, we were surrounded by doctors. September 13, 2013 was the day things changed. The scan took around an hour, but it felt longer with the tension in the room as the doctors checked the images and talked quietly amongst themselves. I was informed of a follow-up meeting in 30 mins. However, both me and sister were sceptical as nothing felt right, but we put our faith in Allah and hoped for the best. After a short while, we were called in…

Courtesy of Ayylifee

As a young mother expecting her firstborn child, there are so many things you can never prepare yourself for and this was one of those. I remember feeling numb and confused with all the information. But I will never forget being asked those ‘sensitive questions,’ as doctors like to call them. The doctor asked, ‘Are you sure about having this baby? Do you know what this will do to you? Can you handle this? You are quite young, so I suggest having to think about this first.’

I was so caught off guard. All I kept thinking about was not missing any important information about the findings from the ultrasound. The ultrasound suggested Congenital heart defects (also called CHD). His heart defects can affect blood flow, causing his blood to slow down, go in the wrong direction or to the wrong place, getting blood clots, and not having enough oxygen to carry throughout the body.

It broke my heart the doctors were even implying to think about terminating my pregnancy. At that point, I wasn’t hearing anything, it was just a blur. I just knew I wanted to protect my baby and do the best I could do for him, even though I didn’t know what that was. To educate myself on what I’d learned, I went on to YouTube to watch videos. To be honest, I really didn’t grasp an idea of anything other than the fact they were all just depressing and sad stories with no actual information. I literally just had faith.

I had the smoothest pregnancy with Adam! I didn’t have much morning sickness and thankfully, my body didn’t change much (apart from the bump). I was quite slim to be fair. People barely knew I was pregnant and when I was due, people thought I was like 5 to 6 months, which seemed funny to me.

Courtesy of Ayylifee

Christmas came and the roads were so empty and quiet. At this point, I was 2 days overdue, so I decided to walk literally miles and do squats because I was ready to bring this baby out! I remember that night so clearly, I walked the whole day! I felt breathless and I remember my mom just took one look at me and said, ‘Girl, you’re going into labor tonight, so have a shower, plait your hair and get ready.’ I did what she said but didn’t think I was actually on my way soon. She told me sleep because I won’t get any later. I took her word for it and dozed off to bed about midnight

Christmas Day, I was woken up at 4 a.m. with sharp pains. I didn’t want to wake up my mom, who was sleeping next to me. I tried to ignore the pain, but it was too heavy and was getting stronger and tighter. I went to the toilet and saw blood. Blood? I was shocked, scared and confused. What was happening? I thought, ‘I got to get this baby out safe and well.’ I woke my mom up and she drove me to the hospital.

Surprisingly, I felt fine when I reached the hospital, only a few aches and pressures which were coming and going. Once I got the hospital, one of the staff looked at me, laughed and said, ‘There’s no way you are in labor.’ They advised us, ‘You can leave and go home. You’re overthinking everything, it being your first child.’ My mom refused. ‘There’s no way she will be leaving.’ 20 minutes in, I was already 3 cm but I couldn’t have the options regular mothers have. I had to go to the delivery suite and be on the heart monitor the whole time. I was in labour for 8 hours and gave birth to my amazing, strong boy who weighed a lovely 7 pounds! It was best and scariest feeling ever.

The first thing I noticed was my son was blue. Blue as in as blue as a Smurf. Blue as in, ‘Please tell me my son is fine!’ Horrifyingly, I literally only saw him for that second as he was being taken away. I had roughly five doctors in the room with me waiting for me to deliver Adam as he needed emergency care ASAP! The first thing the midwife said was, ‘He has talipes. I saw his feet bounce like a frog.’

Courtesy of Ayylifee

‘Talipes?’ I said in my head, sitting on the labor bed looking frozen, ‘Yes, she said ‘like talipes’ (club feet).’ In that instant, Adam was rushed out of the room. While she stitched me up, I asked what talipes was and she replied, ‘His feet are inwards because of the way he was positioned in your stomach.’ I had so many questions in my head, ‘Will he be able to crawl, walk or even stand?’

So many things were happening at that time. My family were all in the waiting room excited to see me. I only shared the specifics with my close family and to the rest, I just said something was wrong with my Adam, but I made it as if I didn’t know very much. As you may or may not know, in the Somali culture when you have your first child and give birth, there’s an overwhelming stampede awaiting to see you and the baby. Believe me, they don’t have to be so close to you, which can be annoying. I was emotionally unable to socialize with elders and all their questions.

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A nurse approached me asking if Adam was my son and explained what had been going on so far. Adam was given medication to keep his valve open so he could get some oxygen into his lungs. I was giving him oxygen through the umbilical cord, that’s why he had to be rushed out and monitored. She told me the rules of the intensive care unit and left me to be there with him. It felt confusing just standing there. I thought, ‘I’m numb.’ I didn’t know what or how to feel. I was thinking, ‘What does his skin feel like?’

I was told, ‘Rest. You just gave birth a few hours ago.’ I reached the Maternity ward and all I could hear and see was crying babies everywhere. It made me feel empty walking down the corridor, even though I had people by my side. I was empty. I didn’t have my baby.

Adam was moved to Great Ormand street Hospital that same night. Once he got there, he had an Echocardiogram, a scan which looks into the structure of the heart, blood vessels and pumping chambers. I couldn’t go with him because I needed to stay a full 24 hours to be discharged. Adam had to have a cardiac cather, which is a groin surgery. Imagine the feeling of not being able to see or be with your child through the toughest of times. Sometimes the very people you take for granted (family) are your biggest blessings. We had an amazing support system and are blessed with a great family from both sides.

Courtesy of Ayylifee

Adam also had a balloon atrial septostomy and ductal stenting, which is a stent being placed into his valve to keep it open for the blood to flow and to keep his oxygen levels up. During this whole procedure, Adam was under a general anaesthetic and the breathing tube they used for him was too small, which caused him discomfort and the loss of his left vocal cord and damage to the right, which basically meant he had no voice. I was told this once Adam was well and out of surgery. Back in the cardiac insensitive care unit, whilst on the ward, I had two females approach me, the most amazing females I’ve ever met in my life. They had already met Adam and seen him whilst I was out grabbing coffee or such. They explained, ‘We are physio therapists and are going to be dealing with Adam once he is discharged from the intensive care unit.’

Adam fought for his life and made an amazing comeback. Of course, he wasn’t going to be perfect, but he was perfect to me. Despite all his little body had been through, we got to go home two weeks post-surgery. This was only the beginning of our journey, but I had comfort in knowing I could soon hold my baby. Adam came home with a NG (Nasogastrictube). I needed to be trained to learn how to use all of this equipment to keep my baby alive in a sense, that’s how it felt at the time. Adam’s recovery was bittersweet. The best time and worst time. On one hand, I was finally able to hold my baby after what felt like a lifetime, but the constant worry and fear of doing something wrong as he had wirings attached to him, was scary. I remember looking at my little boy that survived all this hard ship in his short life and felt grateful to have my baby home and in my arms.

Courtesy of Ayylifee

I went into Great Ormand Street as an outpatient when Adam was 2 weeks old. His feet literally had to be molded back to position and when I say molded, I mean it. I went every Wednesday for 6 weeks straight to the physio department which was named the Ponseti Clinic. They casted Adam’s feet from the upper thigh all the way down to his toes. Imagine a newborn being casted and his feet being manipulated, but this was something that had to be done to fix his feet. They reassured me the outcome would be so worth it and I believed them. Some days I had the power to see the future and some days, I just stood there and cried and listened to him cry his eyes out, but this was the only solution for us. After those 6 weeks, Adam was given a melt brace (which is called boots and bars) to wear for 23 hours of his day for the next 6 months.

Going to GOSH for a follow up, the nurse called us in to check his height, weight, oxygen levels and heart rate. I could hear the beeping of the machine and could see lights going from amber to red. I could also see the panic in the nurse’s face. My heart was racing.

I didn’t understand what was going on in that moment, however, I did know something was wrong. Before I knew it, doctors rushed us out of the clinic and into a ward. Once we were up on the ward, the doctor took us aside and explained, ‘Adam will need open heart surgery as his heart isn’t keeping up with him.’ At 4 months, Adam was still very small and underweight. This meant we were staying over and within the next few days, he would go under the knife.

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Signing the consent form was the scariest thing I’d ever done. To me, it was basically signing away your child to the worst fears a mother could have. The word ‘death’ was written on the risk factors and other things like blood clotting etc. I hesitated as I couldn’t help but feel if something went wrong, I had already accepted it. I quickly came back to the faith I have. Allah is the best of planners. I never read anything so many times over just to be sure. It was like reading a long terms and condition form! I kept reading hoping something would change but of course, we went through with it and signed the form. The day of the surgery was overwhelming! Adam was on three different medications from birth and the doctor said, ‘It will increase after surgery.’

Wheeling him into the theatre room and putting the gas mask on his face as he dosed off was unimaginable. That image never leaves you. I had an ache in my stomach from the moment we were admitted, and it only got worse. Through everything, I tried to stay strong, but that moment got me hard. I cried like a baby, looking into my sons face as he just laid on a blue bubble wrap with his empty body all floppy. I kissed him so hard and touched every part of him before he left me. I was not allowed in the operating theatre. My heart was truly outside my body. I felt crushed and defeated. My emotions couldn’t be hidden any longer as the tears wouldn’t stop. I walked out with my head so low with a face full of fears and doubt. I soaked myself with sorrow in that moment and I really felt like a broken woman.

Courtesy of Ayylifee

We received a small, blue bleep machine which indicates when Adam will be out of surgery. I was told the surgery would initially take 6 hours, which then turned into 8. Imagine! Those extra 2 hours left me on edge. All you could see me do was bite my nails whilst pacing up and down. I knew whatever happened, it was in Allah’s plan.

The next time I saw Adam, he was in the cardiac insensitive care unit on a ventilation machine with many other wires and tubes coming out of him. His heart had been left open. I could see under the yellow plaster his heart was physically beating in front of me. This was all part of the process, but it shook me. My little boy with his little body with drainage pipes cleaning out his blood, the machine working his heart and his body. My baby was in a coma in that moment. He stayed this way for 2 days and went back to theatre to close his chest back. All I could do was pray as the days felt like years.

Courtesy of Ayylifee
Courtesy of Ayylifee

They said they would ween him off the drugs bit by bit, day by day until his body was ready. This process took about 10 days and thanking my almighty God, Adam slowly started to feed through this tube and slowly move around again. I felt like I could semi breathe again. This was a good sign of relief he would be okay. We changed wards and I got to hold my baby again. I was scared to hold my son with all the wires attached to him but the feeling of holding him was sweeter than anything I’d experienced. A sweet emotion is enough to describe the feeling.

I was afraid of taking my baby home. I was anxious I wouldn’t know how to take care of him properly. It was the fear of not knowing how he’d cope without the hospital facilities, but I was determined to learn. I watched every single step the nurses took and did. I learned and taught myself. Changing his nappy was a task, feeding him and moving his small body into position, but as a mother, you just learn how to adjust and work with what you have. The fight in mothers is something I’m still learning. We adjust, adapt and change as we need to. I did better than I thought I would or could. At 20 years old, the challenges I faced shaped me into the woman I am today.

Courtesy of Ayylifee
Courtesy of Ayylifee

Once I got home, I had a whole team that worked with me from speech and language. They also helped with how children feed. There were also occupational therapists to physio therapists on hand. I had access to an on-call nurse which was amazing. I didn’t doubt myself, even though I thought I would. His beautiful face gave me courage every day to have positive thoughts and energy!

Despite everything I went through in my young adult life, it made me who I am today, the woman I am today, the mother I am today. 7 years on, I have had two beautiful daughters and Adam has had his last plan surgery this August and I have documented the whole hospital journey. I finally felt ready to share. I hope you enjoy my story and come join me on our continued journey of life.”

Courtesy of Ayylifee
Courtesy of Ayylifee

This story was submitted to Love What Matters by Ayylifee from London, UK. You can follow her journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.

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‘Your heart is abnormal.’ I sent emails for a month with no reply. I already fainted at work and threw up blood.’: Woman with congenital heart defect shares struggles, ‘Keep fighting, warriors’

‘Your baby’s heart is on the wrong side.’ I cried. ‘PLEASE be with him, I don’t want him to be alone.’: Mom devastated to learn of newborn’s heart defect, wishes she could ‘take his place’

‘Why didn’t you abort her?’ I wanted to put her back in my tummy, where’d she be safe. She had IMMEDIATE surgery.’: Mom loses daughter to heart defect, ‘She shaped our lives’

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