For many heart families, the thought of having another baby can bring up strong and often conflicting emotions.
Below, parents from our private Facebook group for heart parents and carers, as well as parents from our private bereaved parents’ Facebook group, share their experiences, thoughts and feelings about growing their family after having a baby with congenital heart disease (CHD).
You can also watch our family support webinar about having another baby here.
Heart mum, Annie:
Our first child, Eva, is our heart warrior. Eva was born with AVSD and had quite a rough start, with four open heart surgeries before she was four months old. It was never really a question for us whether we would have more children, although we did consider whether to look into genetic testing, but it would not have changed our minds.
We found out we were expecting when she was 14 months old, just before her fifth heart surgery. Being in hospital with Eva at the time made me much more anxious about the baby having a heart defect as well. We then found out we were expecting twins, which made me even more nervous.
As it was a high-risk pregnancy, we were under consultant-led care and had numerous scans. We also had extra scans with the fetal cardiologist, and they could not see any issues, although they explained that scans cannot pick everything up, for example small VSDs. Because of that, I mentally prepared myself for the possibility that they might have a small VSD or something else that had not been picked up.
The twins arrived at 34 weeks. We then found out that our smaller twin has a small VSD, as they both had echocardiograms in the NICU due to their sister’s history and a murmur that had been heard. I will say that I actually overheard a nurse saying that Mum and Dad had not been told about the murmur before the doctor spoke to us. He said he did not want to make us anxious before the scans, but I did not appreciate not being informed straight away.
She has since had her first cardiac clinic check-up, and the VSD is tiny and should close on its own, thankfully. I think because I had prepared myself mentally for the worst, it has been a pleasant surprise to have two overall healthy little girls.
Attending the monthly support groups with Tiny Tickers has helped so much with coping with everything that happened with our heart warrior. I think a webinar on having another child would have been very beneficial for us, so it is great that you are able to offer it now.
In terms of advice for parents considering having more children, unfortunately I do not think anything will completely take away the concerns. However, I would encourage people to push for extra scans to get as much information as possible and help put their minds at ease.
I also wish I had made it clearer to the doctors how important it is to us to have complete transparency. I had a similar issue when Eva was in the PICU. I think sometimes doctors try to avoid explaining potential concerns, but I would rather be prepared for anything.
Our twins are only 10 weeks old (four weeks corrected), and I am finding it difficult seeing them at the age Eva was when she was in hospital. They have also been tube-fed since birth to help with weight gain, which has been triggering at times.
Heart mum, Emma:
Having my second child after losing my precious Daisy was filled with a lot of worry. Everything was definitely more heightened, but the flip side to this was that it saved me in so many ways.
My main worries and concerns were the constant need to know if she was doing okay, if her heart was okay and if she would come home. Having the harsh reality of knowing babies do not always come home made this my biggest fear.
What helped me most was having fetal medicine at GOSH behind me every step of the way. They carried out extra scans for us, and having such detailed checks of her heart really helped to put my mind at ease.
My advice to parents thinking about this now is that the journey will always be tough after experiencing the loss we have, but what comes from it is so much love, through it all. I would always say that having someone else who has experienced the same thing is incredibly comforting. It is having the support of someone who just understands without you having to explain.
Pregnancy in itself is tough, but pregnancy after loss is a real journey. It is never an easy one, but it is one that I personally feel saved me in so many ways, and I will forever be grateful for that journey, through all the love and the grief.
Heart mum, Kayleigh:
We had another baby after our second child, who was diagnosed with hypoplastic right heart syndrome (HRHS). During the pregnancy, we were told we would need to have testing to find out the cause.
We did not want this, as we hoped to have another child, and if it had turned out to be genetic, that would have influenced our decision. We were told by the cardiac midwife that we could not refuse the testing.
Our daughter had her first surgery, a BT shunt, followed by her second surgery, the Glenn procedure. While she was in recovery, at eight months postpartum, we decided to try for another baby. We were not told about the risks of having another child so soon after a C-section, but we were monitored closely due to care from the hospital.
We had a fetal monitoring scan at 14 weeks, and I remember feeling so anxious and scared. When the sonographer said we needed to come back at 20 weeks because they could not see the whole heart, my heart sank.
The next six weeks were horrific, full of tears, and I felt I had no one to turn to. I was so scared.
When we went for our fetal heart scan at 20 weeks, the sonographer told us baby number three was heart healthy. I called her a liar and burst into tears. I remember she gave us the warmest smile and said congratulations. Even after that scan, I truly could not believe he was healthy.
When we had the C-section, I urged the surgeons to pass me my son as soon as he was born. They gave a little laugh and told me he was perfectly healthy. The relief was unbelievable.
Looking back, I really wish there had been more professional support for my wellbeing, but both my second and third children are doing very well, and I would do it all over again in a heartbeat.
Heart mum, Samantha:
Unfortunately, bereavement support during pregnancy is very much regional. I was fortunate enough to have a fantastic bereavement midwife who was with me every step of the way, but I know others who found there was very little support available.
I sadly went on to have another loss after losing my daughter, Helena, so it is not as straightforward as having another baby, as you then have the added worries of other ways of losing a baby.
I have been blessed with my rainbow, but the biggest help for me was being referred to the perinatal mental health team, where I saw a therapist weekly through most of my pregnancy. This kept me going until I had my son.
I wish there was more support after having a rainbow baby, as I personally struggled to enjoy the early days. As he reached his first milestones, it was a painful reminder of everything I was not able to do with my daughter.
Another difficult milestone for me was when my son reached the same age as Helena when she passed away, which is something to be mindful of, as it was unexpectedly hard.
I am grateful to be in a better place now, as my rainbow has helped heal a lot, but having another baby definitely does not fix everything or make things better, as many people have this misconception.
Pregnancy is an incredibly difficult journey after loss, but it is so worth it when you finally hold your baby.
Heart mum, Kirsty:
For us, the benefit outweighed the risk when deciding to have more children.
My son has a genetic condition which is likely the cause of his heart defects, and we knew it was de novo, so the risk of another child having the same condition was minimal. I was under consultant-led care from 16 weeks and saw them every few weeks.
The only concern for me was that I had to keep pushing for an extra cardiology scan. My local hospital looked at me quite blankly when I mentioned it. However, I was not afraid to ask about it at every single appointment I had. Fetal cardiology then referred me back to fetal medicine to keep a closer eye on the baby, which was really reassuring.
Baby was meant to have an echocardiogram, which has never happened (he is now almost two), but he does have a slightly problematic kidney, so has been seen by medical professionals, and I am not concerned. Otherwise, I would have chased this when he was smaller.
It has certainly been a very different parenting experience, and I allowed myself to feel all the feelings around milestones. I still struggle seeing people’s one-week-old photos, as that was the day Teddy had his first surgery, but when Bertie was one week old, it was quite healing. I thought I would struggle more. It has also been emotional seeing Bertie in clothes that Teddy wore in hospital after his surgeries.
I think it is okay to feel sad about it sometimes.
Heart mum, Ruth:
We lost Finlay in May 2021 and gave birth to Iain Louis in October 2022.
I agree with those mentioning the postcode lottery of support. I had hoped that my pregnancy after losing Finlay would have been much better supported. At times, I felt staff were scared to ask the question, “Are you ok?”, perhaps worried about what my answer might be.
About halfway through my pregnancy, I realised I was having PTSD responses to medical equipment, the hospital setting, babies crying etc, and I sought support privately as there was nothing offered or available through the maternity department.
Once Iain Louis arrived, I was of course so consumed with love and caring for him, though I was also very triggered at each stage. At first, I had all of Finlay’s things in a memory box, but then I thought, they are brothers, and instead I embraced sharing his things. This was a comfort, but it also broke my heart. Seeing them in the same clothes and using the same activity mat and rocker.
We lost Finlay when he was 20 weeks old, and I found it really, really hard approaching this milestone with Iain Louis. There was fear, even terror. It brought everything back, and perhaps there was also an element of expecting the same thing to happen.
Iain Louis is now three and a half, and I’ve been caught off guard by things — perhaps a nursery event where it dawned on me that they would have been together, or as Iain Louis has got older, thinking of the fun and mischief they would have had as brothers.
Family life is busy, meeting the needs of a toddler, work etc, and I feel I have to plan time to really give to Finlay. I’m mum to two, and that’s hard when I only have one in my arms. I like to take a day off and go to a particular beach on my own to think, feel and remember, as it’s not always easy to do that while being present for everyone else.
It’s a lifelong journey of learning, but these are just some thoughts and reflections I’ve had so far.
Heart mum, Abby:
Francis is our eldest child, and when he was alive, we often spoke to him about his future siblings. After he died, we decided that we did want to go on to have more children in time, and to give Francis the siblings we had told him about.
We found out we were expecting again 16 months after Francis had died. Before conceiving, we had discussed our plan to have more children with a bereavement midwife, who advised us of the additional reassurance we would be provided with during the pregnancy, and also helped us come to a decision regarding the best hospital to provide the care we needed.
The care we were provided with by the hospital was brilliant. We were kept under the care of the Fetal Medicine Unit and Rainbow Clinic (for pregnancy after loss) throughout the pregnancy, and were scanned every two to three weeks, or more regularly if we had any concerns. I was referred to the perinatal mental health team and was provided with weekly counselling sessions throughout the pregnancy, continuing until my son was nearly one.
We were offered fetal echos at 16 weeks and again at 22 weeks. After our son was born, he was checked over by multiple paediatricians and was given a follow-up appointment for an echo and ECG.
Pregnancy and parenting after loss have been incredibly difficult. A lot of people seem to think that having another baby will ‘heal’ you in some way, but I have found that, if anything, it makes the grief more complex.
Now his little brother is four, knows all about Francis and talks about him every day. He is always excited to visit Francis’ grave and choose his flowers, or to play with toys in Francis’ room. He also understands that sometimes Mummy and Daddy feel sad because we miss Francis, and that it is okay to feel that way, which has given him a great emotional understanding.
We have found that continuing to grow our family is a beautiful way of keeping Francis’ memory alive.
Heart dad, Olly:
I was born with a VSD, and my eldest son, Francis, was also born with a VSD and right outflow tract obstruction. Francis sadly passed away at six months old from a sudden cardiac arrhythmia.
During Abby’s pregnancy with our second child, I underwent genetic testing, as we were made aware of arrhythmogenic heart conditions in our family. This meant that I was diagnosed with an arrhythmogenic condition during the pregnancy, and there is a 50% chance that this could be inherited by our children.
Throughout the pregnancy, we were under the joint care of the fetal medicine department and the Rainbow Clinic, which offered lots of reassurance scans. Every twinge or lack of movement felt like a huge cause for concern, and towards the end of the pregnancy, we were often calling or driving to the hospital for reassurance appointments.
Once he was born, our new baby was checked over by paediatricians, and his oxygen saturation levels were thoroughly checked before discharge. At only a few weeks old, he was hospitalised with bronchiolitis. This caused a short-term heart murmur, which was very worrying for us.
He had an echo at six weeks old at our local hospital, and another with a cardiologist at Alder Hey when he was around three months old. When he was six months old (the same age Francis was when he died), I resumed bereavement counselling, which really helped me to process everything we have been through.
Francis’ brother continues to have six-monthly monitoring for the arrhythmogenic heart condition, but we are confident that his heart is structurally normal. We are being looked after well by our medical team, who are always sensitive to what we have been through and to the worries and concerns we have.
Heart mum, Gina:
I was six weeks pregnant with our little girl when we lost our beautiful five-year-old boy.
We had lots of scans and, as you can imagine, this was a traumatic time for us. Even just entering a hospital was traumatic, but she is all okay and now running around at two and a half years old.
I wish there was so much more support.
Watch our family support webinar on having another baby, featuring Cardiac Nurse Specialist Gill McBurney and Clinical Psychologist Rachel Avison, who explore antenatal, postnatal and psychological perspectives alongside real family experiences.
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