Christine & Darragh’s Story
My story is long, but I know there are mams and dads out there who have had barriers as high as mountains and additional issues that compounds the grief of receiving the worst news about their baby. You are not alone. I wrote everything here in case anyone needs to read it.
2022 was the best year if our lives. We were settled in out dream house, we got married, we had a lovely hot summer and we were just enjoying life. I thought 2023 would be even better, as I found out I was pregnant before Christmas. We were on a one way trip from the best to the worst year of our lives.
In January, I started bleeding and found out at 11 weeks that I had miscarried at 8 weeks. I had a traumatic hospital stay.
In June, I found out I was pregnant again. We were so happy but were slow to break the news. We didn’t tell anyone until we got the 12 week scan and felt reassured that everything would be ok.
At 15 weeks, I ended up in hospital in Cavan with visual problems. They were concerned about stroke so I was kept in for a week. Peter’s car wasn’t running properly so I didn’t see him at all. I asked not to be put on the maternity ward as I was traumatised from my miscarriage. I cried every day in the hospital for my lost baby and I was worried about the baby in my belly. I was due to go to maternal medicine in the Rotunda that week and was sent up to Dublin by ambulance from Cavan to the appointment. When I was there, the doctor did a quick scan with a poor quality image and showed my baby’s heart beating and said everything was fine. Again I felt reassured.
As the weeks went on I felt a lot of movement. I felt him move every day. At 19 weeks, I went a day without feeling anything...the next day I didn’t feel anything all morning. I called Rotunda ED and they said not to worry but I explained I was concerned because I had been feeling so much movement and now nothing. We went to ED. The midwife did a doppler and we could hear the heartbeat. She said we could go home, or wait for a scan with the doctor for our own reassurance. We said seen as we had made the trip, we would get the scan just to make sure everything was ok.
When the doctor brought me in I told her my anomaly scan would be in 8 days. I said I just wanted to make sure there was nothing impeding the baby. She started to scan and then she asked me “when is your anomaly scan again?” There was something in her voice. I knew she had seen something. I figured, if it’s not serious I will find out at the anomaly scan, ED isn’t the place for me to be asking her. If it was bad she’d tell me. She then took the measurements of the head and said it was all normal. I could see in her face there was something, and when she saw me out the door she told me very genuine “take care”.
I went on not worrying. On Monday Oct 16th, I was sitting in the waiting room for my anomaly scan. It was my auntie’s birthday and I had forgotten, and was rushing to order her flowers before I got called. I was stressing so bad about the flowers! I naively went alone for the scan, because what could go wrong? I had a lovely sonographer who took lots of pictures for me because Peter wasn’t there. Then she moved on to the heart. I wasn’t really paying close attention, until I noticed she was looking for some time, and hadn’t said much. I’m a nurse, so I know for the most part what a heart should look like on ultrasound. I could see a big hole in the heart, the middle septum was missing. I said nothing. She then said, “there is a problem with your babies heart”. I burst into tears. I felt then that he was going to die. His stomach was also on the wrong side. My placenta was low too. I asked her what was wrong and she said I need to see a consultant. She said they couldn’t see me for 2 days. I can’t believe they cannot get a doctor to you straight away. How can they send you home for 2 days to cry and wonder the fate of your baby.
On the Wednesday we went for the scan. It took about 20 minutes. I was shaking and sweating, trying not to cry. We were told he had a septal defect, and that the 2 arteries were on the same side. She said he would need surgery but it could be fixed. We would need to see the cardiologist in 3 weeks time, as she only comes once a month. I asked about my placenta, and was told it was ok. They wanted to do amniocentesis, but I didn’t want to risk miscarrying my baby if he was going to survive with this heart problem so I didn’t get it done.
I cried for a few days but then I realised, he’ll be ok. I had a list of 20 questions for the cardiologist. On Nov 6th, she was there with the foetal medicine consultant. I lay down and the cardiologist asked in a low voice “is there a health act consideration here?” The other consultant said she wasn’t sure. I knew then for sure it was very, very bad and lay there in silence shaking for about 30 minutes while she scanned me. The cardiologist told us this condition is called right atrial isomerism (Ivemark syndrome). It is very rare and one of the most severe cardiac abnormalities that can occur. Instead of a right side and left side, Darragh’s organs thought they were all meant to be right sided. The left side of his heart was programmed to think it was the right side, so all the veins and arteries were connected in the wrong places. His left lung had 3 lobes like a right lung. His stomach was on the right, his liver was in the middle. It was very likely he didn’t have a spleen. His pulmonary artery was very narrow, which is a feature of the condition. In some babies it is completely blocked.
She said “you have 2 options. Your first option is to go to England and have an abortion.” I was shocked....I had been told he would be fine 3 weeks ago! “The second option is you can continue your pregnancy, we will induce you and have a controlled labour.” Based on her scan, he his life expectancy was 6-15months without medical intervention. She said the condition is not curable, but the “palliation” consists of major heart surgery to relieve symptoms. Even with this, more than 50% die by age 16, and single figures make it to age 30. I asked if we could just let him be born and die naturally, but she said no, they would be forced to intervene. She asked if we had any questions...I said all my questions were for him surviving. I then asked what age he would need the surgery. His first surgery would be at 4 weeks old to widen the pulmonary artery. Then he would be planned for a big heart surgery around age 3. This surgery was to make the heart only pump blood to the lungs because of the big hole in his heart, and they would connect the blood vessels in some way to bring blood from the lungs to the body. To me, this sounded horrific. I asked “what are their lives like?” and she said “if you ask anyone what their life is like they’ll tell you it’s fine.” Again I was told my placenta was low.
We went home. I started looking up studies. There weren’t many because the condition is so rare. I looked at survival, predictors of mortality. He was ticking all the boxes that indicated he would have a very short life. There was about a 90% chance he wouldn’t have a spleen, which brings its own set of problems, namely recurrent infection and sepsis. I trained in children’s nursing. I have seen sick babies. I have seen how sick they are. I looked up blogs of children with this condition. There were only a couple, and they seemed to pass away around age 3 or 4. The ones that lived longer had milder presentations on the condition. I also learned the bowel can be turned the wrong direction, needing further surgery in the 1st year of life (and on post-mortem it turned out Darragh had this too). Absolutely bamboozled, I called the foetal medicine midwives with questions. She said to come to clinic tomorrow to see the consultant and booked us in.
When we got there, the consultant seemed annoyed at having to see us and asked “why are we here?” I explained we had questions and we were advised to come to clinic. We asked our questions and I also asked about any risk to the bowel, to which she replied there was none.
I spoke to the cardiology nurse in Crumlin, who gave an insight into what his life would be like: in and out of hospital constantly, not able to participate in activities properly, lots of fatigue etc.
2 days later on Friday, we made the decision to protect Darragh from a life of pain, and a drawn out death from heart failure or sepsis. I contacted Liverpool and she said she would get back to me on Monday. On the Sunday night, there was a bad storm. Our power got knocked out and the local cell tower was down. On Monday, I went in and out to the car trying to see if I had a missed call, because I could get 1 bar of signal out there from the next tower over. At around 4:30pm I called Liverpool and she did call me back around 5:30. She asked us to come that Friday. I got my brother to book our flights and accommodation for the night before because I couldn’t get any internet.
I had been waiting for a plan and was in such a daze that I went into work the next day. I told my manager I only found out the previous evening that we were going to Liverpool. People came up to me hugging me, and some people didn’t know yet. I was with patients who didn’t know I was pregnant because my bump was small, and just thought “they have no idea that there’s a baby in my belly and he’s going to die.” I went into the kitchen for break and I started to cry. My colleague asked if I was ok. I shook my head and said “my baby’s going to die.” She hadn’t heard yet and couldn’t believe what I was saying. I ate and then went home.
In the meantime, I was learning from the Honeysuckle midwife that sneaking babies home on the ferry is the norm and what most people from Ireland do. The ferry was not an option for us as it was just too long of a journey from where we live. She said cremation in Liverpool could have a 2-3 week wait, which also shocked me, as it tends to be quicker in Ireland. Nothing we could do to change that.
The flight over was rowdy. Last place we wanted to be. Our consultant in Liverpool, our midwife Siobhan and all the doctors and staff were so amazing. After the cardiologist confirmed the diagnosis, the foetal medicine asked if there were any other concerns. I asked him to check my placenta as I had been told it was high and low multiple times. He saw blood pooling along the bottom of my placenta. He showed us the blood swirling on the screen. He also saw a mass of vessels near my cervix with blood pooling in them. He said they could not do the termination because he wasn’t sure of the source of the blood vessels, and I could haemorrhage uncontrollably if my cervix stretched and they burst. C-section wasn't an option in case the blood vessels got damaged. He got 4 other doctors in to look and see their opinions, but no one was sure. He said I needed an MRI, but they did not have one in the hospital. We would have to go home and get and MRI and send the images across.
In disbelief, we went home. There was a baby in the aisle opposite us that cried and broke my heart. We worried every day if I was going to bleed to death. Peter was off work to stay with me in case I bled. I was scanned in the Rotunda again, and they could not see anything that was talked about in Liverpool. We explained what he had showed us on the screen, but they could not see it on the ultrasound in the Rotunda, and neither could me and Peter. I got the MRI a few days later. There were issues sending it across. I emailed 2 types of images, I offered to post the disc. They wanted them sent on a certain programme, but it wasn’t possible from Ireland to the UK because the networks are separate. This went on for a few weeks. The Liverpool consultant wanted to organise an MRI for me in Sheffield because it was taking so long. I contacted them but the placenta specialist was on leave the week I called. In the meantime I kept asking the Rotunda for info on what was in the MRI, if I needed to be concerned about haemorrhage. They said they heard verbally that it was ok, but I wanted information on what exactly was there. I didn’t get any answer. I was also dealing with the Liverpool midwife saying I wasn’t their patient, and my Rotunda consultant saying I wasn’t their patient. The Rotunda consultant’s mentality was that I had self referred to Liverpool, so she no longer was responsible for me. She said they were organising the MRI as a courtesy. I challenged her on this and said that I was recommended to go to Liverpool by the hospital for care I couldn’t get here, and that I am her patient. If I am in Ireland attending an Irish hospital, I’m their patient.
Those weeks were torture. Actual torture. I called the mental health number for the Rotunda one evening, but no one answered because it was after 5. I emailed a charity because I couldn’t face talking on the phone then (but didn’t hear back for a few days). I sat alone in the kitchen bawling crying because I was stuck…I didn’t know if I was going to live or die, if my baby was going to end up reaching term, if my husband was going to lose a wife and a son and be left alone in the world. I didn’t know if I would get an answer before Christmas. Darragh was getting so big I was starting to think about continuing the pregnancy.
They ended up posting the MRI disc. I finally got a call back from Liverpool. They had a meeting with the placenta specialist and told me I had a placental sinus (which is a collection of blood but should be harmless), and distended veins close to my cervix. It shouldn’t be an issue but they would be prepared for haemorrhage. If I needed a hysterectomy, I would cost an additional £6,000. The consultant was, again, amazing and so reassuring. I felt I would be safe. During that time I wrote letters to Darragh about him kicking, having hiccups and different things.
We went over on Monday Dec 18th. I asked the doctor the take pictures of Darragh during the scan, and some of his heart because I wanted pictures of the reason we were all there. She gave me a picture of the heart beating, and one between beats.
At around 3:30pm, Darragh’s little heart was stopped forever. I started taking the tablets for labour that night. My labour was extremely painful because my waters wouldn’t break. We had the most incredible midwife Brigid. She asked the doctor if she could sweep to break the waters but they said no. I felt like I was going to die from pain and was screaming for help. I cpuld feel his head trying to move down, I just had to break my waters and contorted my body until they burst.
Not long after that, at 5:30pm on Dec 19th, little Darragh was put on my chest. He was so warm and I just waited and waited for him to take a breath. He looked perfectly normal. I felt he was so fragile and was afraid to handle him too much, so another lovely midwife Cathy help us bath him and she dressed him. I hadn’t brought any clothes but they had very cute bear baby grow and a blue hat. We chose Darragh’s name that evening and stayed with him until the following night. We left the hospital at 8pm. It was like tearing a piece of my heart off walking away from that room. Fighting the instinct to stay with my baby is the strangest thing I have ever done. We didn’t see the Honeysuckle team properly at all, just for a few minutes before the termination and not at all over the next 2 days.
We decided to get a post mortem, because we wanted to know if he had a spleen. It was a big factor in our decision. Having a bad heart is one thing, but combined with no spleen is so much worse. The post mortem was delayed because of Christmas. When Darragh did get to the funeral home, I asked them about cremation. There wasn’t an available date for another 3 weeks. I just couldn’t believe my baby would be left hanging around for 4 weeks after he was born, unable to rest and away from me in another country. I booked the date and bought the casket, but desperately tried to find out if repatriation could be done quickly. I found out very soon it could not and would also cost an additional €2,000 or so. I was so defeated.
When we got back to see Darragh, the staff in the funeral home were fantastic. The room was done up nice with teddies.. But because of the delay, Darragh had started to decompose. His little nose was gone all soft and started to rot. His baby grow which was white with blue bears was all stained. I just kept stroking him, apologising and saying “it’s terrible, it’s terrible.” I kissed him on his blue hat. I was so upset because if we had been able to end the pregnancy in Ireland, we wouldn’t have this awful memory of the last time we saw our son. I still feel like I failed him, even though it was out of my control. I couldn’t wait to finally let him go after seeing him that way. We spent a few hours with him. The next day we collected his ashes.
If his pulmonary artery had been narrowed completely, Darragh would have “met the criteria” as he would die within 28 days. We were left with a grey outcome, no set length of time he would survive, the cardiologist dodged my questions.
9 weeks passed between when I got my anomaly scan and when Darragh died.
We had so many issues, so many traumatic interactions with healthcare workers and traumatic memories. But thankfully the care we received in Liverpool was on another level. We will never forget our precious baby boy and the doctors and midwives who looked after us and him, who visited us, and who cared.
