‘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’

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“My 10-month-old son, Teddy, has a congenital heart defect. An abnormality was discovered during my 20-week scan. The sonographer told my husband, Nathan, and I, ‘Your baby’s heart is on the wrong side.’ The sonographer went very quiet and kept putting her body in strange positions. She said the baby was laying awkwardly and she was trying to figure out what side the heart was on. She called in another sonographer for a second opinion. They confirmed our baby’s heart was on the wrong side. What? I was devastated and didn’t know what it meant. I cried was soon as we got out of the hospital.

Courtesy of Georgia Webb

We were referred to Southampton hospital (UK) who specialize in heart conditions for further scans three days later. These scans showed our baby’s heart was very complex and he would need surgery once he was born. Teddy has Double Outlet Right Ventricle (DORV), a left isomerism, AVSD and situs inversus (his heart, liver and stomach are on the opposite side of his body). Dr. Black drew pictures of our babies heart which helped us to understand how it was so different from a healthy heart.

Nathan and I didn’t know anyone with a heart condition so initially we felt quite isolated. I was very open about our baby’s condition straight away and looked for support on Facebook and Instagram. Following other people’s journeys with their heart warriors gave me a lot of hope. I didn’t feel so alone. I follow several heart warrior moms on Instagram who I message occasionally for advice. They are always really supportive and reassuring.

Going back, I was supposed to be induced at 39 weeks but went into labor at 37 weeks. I was extremely scared because I wanted to be in Southampton, surrounded by heart experts. I hadn’t even packed my hospital bag and I still had one more week left to work before maternity leave. I was airlifted to Southampton hospital (we live on the Isle of Wight) as our local hospital was concerned about our baby’s heart condition. I was wearing flip-flops as my ankles were so swollen and I couldn’t get any shoes on (it was around 6°c!) and I didn’t even have a change of knickers! I was absolutely petrified of being in a helicopter while having contractions. Nathan was bloody loving it and filming the whole thing. (Men!) The midwife was pretty scared too, bless her. She just kept asking ‘are you ok?’ and my husband kept asking her if she was ok as she seemed scared herself! As soon as we landed in Southampton (a 12 minute flight) the midwife had to make her own way back to the island. I am so grateful to the coastguard who flew us to Southampton and allowed my husband to accompany me.

Teddy was born on November 19, 2018. My labor lasted 17 hours. He was stuck sideways so forceps and a suction cap were used as well as a spinal as I was so exhausted and couldn’t physically do anymore. It was an amazing surprise to have a baby boy as we were so convinced we were having a girl! Teddy was so bruised from the forceps they rushed him away as they thought he was a blue baby. I didn’t really know what was going on. We were allowed a quick cuddle as soon as Teddy was born and then he was taken to NICU. I asked Nathan, ‘please be with him, I don’t want him to be alone.’ I was numb from the waist down so I couldn’t move.

Courtesy of Georgia Webb

Teddy stayed in Southampton hospital for 8 days after he was born. Luckily we were all allowed to stay for the whole 8 days and we slept on the same ward as him. His heart seemed to be coping pretty well so we were all sent home. It was scary taking him home without all the wires and machines informing us how his heart was doing 24/7. I was extremely anxious and constantly checking if he was breathing ok.

Courtesy of Georgia Webb

When he was 5 months old, I received a phone call from the hospital saying, ‘Teddy requires a pulmonary band to slow the flow of blood into one of his ventricles.’ The phone call came out of the blue and was a bit of a shock as Teddy hadn’t shown any signs of struggling and seemed a happy and reasonably healthy baby prior to this appointment. We were asked if we would like to meet the surgeon to ask any questions. We met with Mr. Kaarne a week before Teddy’s pulmonary band surgery. He was so relaxed about the procedure and reassured us it was a routine operation.

The operation came with complications as Teddy leaked a lot of blood, causing one of his lungs to collapse. His chest had to be reopened 72 hours post surgery and a drain was put in. We were absolutely devastated Teddy had to go back into another operation so early on. Once again, we had to sign the papers prior to his surgery warning us of the risks…death being one of them. Reading those words is so scary and heartbreaking. It was 4 a.m. when he was taken for surgery. Nathan and I waited, and waited, unable to sleep. At 9 a.m., the surgeon, Mr Laarson, came to tell us, ‘The operation was successful and you can see Teddy in PICU!’ I was so excited to see my little boy and give him a big kiss. Seeing Teddy lying there completely surrounded by tubes, wires and machines completely broke my heart. We were so helpless and he was so tiny. It didn’t seem fair.

The hardest part was watching Teddy when he went under general anesthesia. Watching him go under and being completely oblivious to what his little body was going to go through was heartbreaking. Then having him put under again just 3 days later and his chest being reopened was extremely upsetting. I wish I could have taken his place. It is very hard not to feel guilty. He recovered well though, and we were all sent home after 2 weeks. Teddy’s zipline is healing really well and it isn’t so upsetting to see now, to us it just proves how brave he is. Teddy will require further surgery when he is around 10 kg. His heart is basically backwards so it will need ‘replumbing’.

Courtesy of Georgia Webb

Teddy lives a pretty normal life and you wouldn’t know he has a heart condition. A nurse checks his oxygen saturations weekly…which is around 75-80% (a healthy baby would be close to 100%). We have certain things we need to look out for; increased breathing, blue lips or hands and sweating.

I SO wish someone would have told me not to be so excited for my 20-week scan and not to presume the baby would be perfectly healthy. Also nothing unusual was picked up in my 12-week scan. I have found the network through social media really helpful and I am grateful to everyone I have contacted for their support and advice. One mom told me her how 25-year-old daughter now runs marathons. Another mom told me her 9-year-old daughter is a competitive gymnast. We have also purchased children’s CHD books and read them to Teddy. We want him to grow up knowing there are other children out there with CHD and to be proud of his ‘zipline’.

I would reassure parents, especially first time parents like myself that their baby will be in the very best hands. Babies are actually so robust and so incredibly strong. We are grateful Teddy’s heart condition was picked up so early on. Being a first time mom is daunting enough, let alone when your new tiny baby has a serious medical condition. When all your friends and family members are producing perfectly healthy babies, you don’t need to feel alone, there is always someone in a similar position as you.

Courtesy of Georgia Webb

Teddy is such a happy and very cheeky little boy. He has been through so much and my husband and I couldn’t be any prouder of him. I love his amazing smile, when he raises his eyebrow at me, his cuddles and his sloppy kisses. Even 3 days post surgery he was smiling, he is so resilient. All we hope is he will live a perfectly normal and healthy, happy life and not ever let anything stand in his way.”

Courtesy of Georgia Webb

This story was submitted to Love What Matters by Georgia Webb of Isle of Wight, UK. Follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribeto our free email newsletter for our best stories, and YouTube for our best videos.

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