Rowan was born on 10th August 2020, in the midst of the pandemic. I remember sitting and reading these stories before he was born, the good and the bad, to try and prepare myself for what might come. It’s taken until now to share our story; I finally feel ready. Ours has a happy ending but the journey was incredibly difficult. I hope our story brings some hope and comfort to you reading this..
In April 2020 I attended our 20 week scan, excited but apprehensive about attending the scan without my husband who had to sit and wait in the car due to restrictions.. I remember how quiet the sonographer was while she looked at the screen. It felt like a lifetime before she finally said “it might be nothing but your baby’s heart isn’t quite where it should be, I’d like to get a second opinion”. Another sonographer performed my scan, before confirming that baby’s heart was positioned to the right (not the left where it should be) and that they would refer me for another scan with the consultant.. they also told me we were having a little boy. I went out to my husband in the car, shared our gender news before bursting into tears and telling him “but there’s something wrong”.
This marked the start of a long road for us. I was seen by a consultant who initially diagnosed possible Situs Inversus. We researched this endlessly, trying to understand what this would mean and felt we were coming to terms with this diagnosis. But further scans and eventually an MRI confirmed that Rowan didn’t have Situs Inversus at all, he had a left-sided CDH. It was a severe case, which had caused the stomach and intestines to herniate into the chest cavity, squashing the lungs and pushing the heart to the right. We were told that Rowan’s survival rate was going to be poor. Our world fell apart in that moment.
We were told that I would be under the care of Leicester Royal Infirmary and would be induced there at 38 weeks. I had weekly scans leading up to this point (which thankfully my husband was allowed to attend with me). Despite his diagnosis Rowan was otherwise healthy – a good size and weight and no other congenital issues. The weekly scans monitored the extent of the hernia, we were told that one lung had hardly developed at all and the other was around half the size it should be. There was also a hole in his heart. The doctors explained that as soon as Rowan was born he would be unable to breathe so they would need to sedate him and intubate him immediately and rush him to NICU for further treatment. Once stable he would need urgent surgery to repair the hernia.
In the days leading up to my induction we hoped for the best, that Rowan would stabilise enough to have his surgery, but prepared ourselves for the worst, that we might have to leave hospital without our baby. I was induced as planned at 38 weeks, I responded well to the induction and began natural labour (this is the preferred method of delivery for CDH babies). Once my contractions started Rowan began showing signs of distress, his heart rate kept dropping. A quick decision was made to do an emergency C-section, I was rushed to theatre within minutes and 10-15 minutes later Rowan arrived.
The NICU team were on standby in the room adjacent to the theatre. The surgeon lifted Rowan up to show me before whisking him away. I didn’t even get to touch him. I told my husband to leave me and go with him which he did. This was an incredibly painful moment, being apart from Rowan and my husband and not knowing what was happening in the next room. The NICU team worked hard and managed to get Rowan stable enough to move to NICU. The wheeled the big portable incubator in so I could see him briefly before they took him down. I felt like I could breathe again, it was a first little victory and a sign of how strong Rowan would prove to be.
Rowan had his surgery at 3 days old (the 4 hours he spent in theatre was the LONGEST wait of our lives) and spent next 10 days in NICU at Leicester Royal Infirmary. The doctors and nurses were nothing short of incredible and we were never in doubt that Rowan was in the best possible hands. Once Rowan’s condition stabilised (breathing unaided, using less oxygen, heart rate improved, tube feeding well) we were told that he could be transferred by ambulance to our local NICU in Peterborough. This was welcome news, we were desperate to be closer to our friends and family at home.
Rowan spent another week in NICU at Peterborough Hospital. During this time he was slowly weaned off oxygen and tube feeding, something he thankfully responded well too. The staff here were also amazing and helped prepare us for going home, including an overnight stay with Rowan on the ward. We were terrified about him leaving the safety of the unit but so excited to finally take him home. On 28th August 2020 we finally did, 18 days after Rowan was born. This moment was just magical, it felt like a miracle. Against all the odds, Rowan overcame every little hurdle and was so incredibly strong.
Our arrival home wasn’t initially easy, Rowan had to go back into Peterborough Hospital 2 weeks later due to feeding issues and was rushed by ambulance back to Leicester Royal Infirmary. But after another week’s stay he was allowed home again and he’s thankfully been home with us ever since!
Rowan turned 2 in August this year and has grown into a kind, cheeky and loving little boy. Aside from a recurring chesty cough (which is still being monitored and could be early onset asthma) Rowan is otherwise in very good health. Fortunately there doesn’t seem to be any other complications associated with his CDH history. He has a cardiology review in December and will be discharged if they remain happy with his heart (the hole has nearly closed completely).
We know how lucky Rowan is and are thankful every day for his successful treatment, recovery and good health. He is our whole world. We are now expecting a little girl in January (who is healthy and CDH-free) and just know Rowan will be the best big brother.
If you’re beginning your CDH journey, my thoughts and prayers are with you; sending you hope and strength for the journey ahead.