9: Baby A’s Story – Congenital Heart Defect

The day of baby A’s birth was a calm and happy day. All staff involved in the c-section were positive and extremely supportive, and I was completely relaxed as a result. It wasn’t long before baby A was shown to me over the screen and all I remember is a head full of dark hair.

It was at this point that one of the surgeons called in the paediatric consultant, and all I heard was there was meconium present as she was born. As a result Baby A wasn’t handed to me for skin to skin, and instead was whisked away to have her oxygen levels and various other stats checked.

I was taken to recovery, and my husband went with the consultant and our daughter, and all I could think of was why concerns had been raised. Part of me also thought that maybe this was just the way things were done, especially as I had just had surgery, and assumed all would be well once I was back on the postnatal ward. But every minute without knowing what had happened or what was going on was a minute too long. The nurses on the ward kept me in conversation, and entertained throughout, and reassured me that it was quite normal that at times extra checks are carried out.

It was an hour or so later when I was finally reunited with my husband and baby A, and I was told that there was a possibility she had an infection but this could be easily cleared with antibiotic, and I breathed a sigh of relief.

I finally held my daughter in my arms for the first time, and all I could do was stare at her rosy cheeks and soft face while being taken from recovery to the postnatal ward. This was everything I had dreamed of since I was a little girl, and after so many years of struggling to conceive my daughter was in front of me ready to take on the world.

The nurses continued to monitor both me and baby A through the night and it was early next morning we were told that baby A would be having a heart echo as her oxygen levels were slightly lower than they would have liked. Assuming this was just standard procedure, my husband accompanied baby A for the echo and I waited eagerly for them to return.

It wasn’t long before my husband came back, but he didn’t look as relaxed as he was when he went. He was holding tightly to a piece of paper with a drawing on it, and kept saying I needed to speak to the cardiologist as something was wrong with baby A’s heart. I sat there in disbelief, and couldn’t understand what he was saying and why there would be something wrong. He explained that they had found a few holes in baby A’s heart, and one of them was between both heart chambers and could result in blood flowing in the wrong direction.

The cardiologist came later that day and explained that they had heard a heart murmur at birth, and subsequently during an echo they had found 3 holes in baby A’s heart (PFO, patent ductus arteriosus and aorta pulmonary window) and that if this wasn’t further investigate there could be a possibility of early heart failure. The cardiologist, however, was hopeful that the holes would close naturally (as it’s quite common for babies to be born with holes in their heart), and asked us not to worry and they would do another echo a few days later.

We ended up staying at the hospital for 4 days in total while baby A was frequently monitored. Unfortunately, the holes didn’t close and due to the rarity of their placement the scans were sent to the cardiologists at Great Ormond Street Hospital. We were then referred to Great Ormond Street Hospital, who took on baby A’s case.

The cardiologist at GOSH said there was still hope that the holes would close naturally, and we were asked to keep an eye on baby A’s breathing and on her feeding and weight gain. Unfortunately, baby A struggled to put on weight and we were in and out of hospitals a number of times in the first two months post-birth. As each week progressed her breathing became noticeably heavier and she would breastfeed for hours but would still be constantly crying. My midwife checked her latch and said she was fine, and couldn’t understand why she wasn’t satisfied after such long feeds.

It was at her two month cardiology appointment that the echo showed the left chamber of her heart was filling with too much blood for it to function properly and could result in cardiac failure (left ventricular overload). It was explained that this was causing her the difficulties in breathing while feeding, and hence she was not gaining as much weight as they had hoped. Baby A had lost her pink cheeks, and had started to looking visibly unwell. She has a sharp jaw line and sunken eyes, and every day it was a struggle to get her to feed and keep it down. We were told to keep an eye on her breathing day and night, and to prevent her from crying and not to have her lie on her stomach.

My husband had returned to work after his paternity leave, and worked 12 hour shifts (plus 2 hours commuting to and from work) and I was exhausted from having to remain alert all the time to make sure baby A was breathing and not distressed.

It was at this point that the cardiologist had noticed that the holes were increasing in size, and surgery was the only option left to resolve the issues present and prevent cardiac failure. The only problem was that baby A needed to be at least 5kg before she would be considered safe for surgery, and so we were referred to a dietician and baby A was moved onto prescription high energy milk.

The high energy milk was well tolerated by baby A, and even though we were told not to worry if she didn’t have a full feed, we would both try and ensure that she managed to have her recommended daily amount, and would feed her a couple of ounces at a time to prevent vomiting and tiredness as a result of feeding. It would take over an hour (with breaks in between) to feed her, which resulted in sleepless nights and the constant feeling of being on edge.

The constant pressure and stress also impacted our relationship, especially as my husband had such long work hours, and in the end the only solution left was for him to request moving from day shifts to nights so he could be at home to support me. It was also at this time that he encouraged me to return back to work and the parenting role started to feel more equally shared out between us. The support of having him with me during the day, or being able to focus on something other than appointments, doctors and feeding whilst at work meant we slowly found a much more sustainable routine and things began to fall back in place.

On 15th July 2019 baby A was admitted to GOSH for surgery. The surgeons had opted against open heart surgery and offered to carry out a relatively new procedure of cardiac catheterisation (keyhole surgery), and insert two devices inside baby A’s heart to close the holes.

We arrived at the hospital at 11am, and after some routine checks sat and played with baby A until it was time. We accompanied her to the general anaesthetic room, and the room suddenly felt really cold. The anaesthetist said we could hold her while they sorted out everything that she needed, but all I could focus on was the small room we were in and my baby girl attached with wires to various machines. They prepared us by explaining that once baby A was given the general anaesthetic, and it had started working, she would get drowsy until she “fell asleep”. Soon after this the anaesthetist asked us to say our goodbyes. Baby A held on to my finger until the last moment and then I was asked to let go.

We returned to the ward, and looked at the empty cot in front of us and silence surrounded us. A while later one of the nurses came and told us to get some fresh air and food, and reassured us that as soon as they heard something they would call. Neither one of us spoke. We walked in the streets surrounding the hospital, and couldn’t think about food or anything other than how baby A was doing. Our hearts felt tight. We silently returned to the ward and waited some more.

It felt like an eternity later when the nurse came and said baby A was out of surgery and starting to wake up, so we rushed to go and see her. We could hear her cry from the other end of the corridor, and as we entered the room where she was she saw us and was in tears. Every part of me ached as I held onto her. Her body felt weak and limp, and then she looked straight into my eyes with such sadness that a part of me felt she was questioning why I left her and why she was in pain. I felt my legs go weak and passed her on to my husband as tears started rolling down my face.

The surgeon met with us and said that there had been difficulties in placing one of the devices and there had been talk of having to cancel the keyhole procedure and opt for open heart surgery instead. Baby A had unexpectedly lost a lot of blood in the process too, however at the final try they were able to place the device and the surgery was a success. The surgeon also said that there was a possibility baby A would need a blood transfusion to replace all the blood lost, but they would keep a close eye on her overnight to make sure her recovery was going well. Thankfully, baby A was thriving, and by the next morning she had forgotten the events of the day before and she was happily playing again.

We left GOSH later that afternoon, and as soon as we entered our home baby A was all smiles again. The only evidence of surgery were two 1cm marks on her inner thigh, the thickness of a scratch. She wasn’t in pain and wasn’t irritable, and for the first time in 5 months she was drinking a full feed without difficulty and was finally starting to sleep much better too.

In January 2020, baby A had her 6 month post-op follow up with her surgeon. She had been on aspirin and iron supplements throughout the 6 months after surgery, which caused her distress and vomiting on a daily basis, so she was not yet weaned off the high energy milk. However, the difficulties in feeding had completely disappeared, and her breathing had normalised. Baby A had learnt how to crawl, stand and take her first steps and we finally started to feel as though we were enjoying our days together as a family of three.

In the 6 month post-op the heart echo showed that even though there was still slight blood flow from the left to the right chamber of the heart, and the left atrium and ventricle were mildly dilated, the closure devices that were in place were stable. This was the good news we were hoping and praying for every single day since she was first diagnosed.

Baby A is now 20 months, and if you meet her you would never know she went through all of this in the first 12 months of her life. She will need to have an echo every year for the rest of her life just to make sure everything is in place and working well, and her heart condition will inevitably be discussed if she plans on having children of her own, but for now we are just so grateful that she is with us and she’s doing well.

Yes every day was a struggle, and the waves of emotions we felt were overwhelming, but the kindness from all the staff at GOSH and our midwife, and the unwavering support of our family and friends kept us united and whole. Our relationship has gone through it all over the last 2 years, but I am grateful that we are now in a stronger place as a result and have learnt that we are always better together.

For anyone reading this who is going through anything similar, or has gone through it, then take comfort in knowing that with hardship will come ease. Trust and support each other, especially when you’re feeling the most vulnerable or the most scared, and keep talking. Sending all my love and prayers to you, and feel free to get in touch, even if it’s just to have a listening ear.

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