Today I’m a proud mammy of two beautiful babies. My daughter Leah is two and a half. A determined, beautiful loveable little lunatic. My son Luke is 10 weeks. A calm, easy going happy little man.
The past six months have been the hardest of our lives. At our 24 week Anomaly scan a foetal abnormality was discovered. Our baby’s heart was on the wrong side of his chest.
All the team could tell us was that it looked very serious and we would need a second opinion from the Rotunda. We had to wait five days for our appointment and they were hell. We did not know if our boy would make it to full term, would he die or would he be very sick when he was born. We were in limbo.
Telling friends and family was very tough. Our little family were shuck to the core.
It took six weeks until we got a full diagnosis of what our baby had. We were told it was a condition called Congenial Diaphragmatic Hernia (CDH). It’s a rare enough condition and only affects 10-15 babies born in Ireland each year. It’s where the diaphragm either doesn’t fully form or has a hole causing organs like the stomach, bowel and spleen etc to go up into the chest cavity. This squashes the lung and prevents it properly growing. When babies are born they cannot breathe correctly due to this. CDH has a mortality rate of 50%. Meaning only half of the babies with this condition survive past birth.
Due to the seriousness of the situation I needed to deliver our baby in the Rotunda. It was decided that I would have him via C-Section as it was the safest method. Our baby needed a big team of neonatal specialists available at the birth to ventilate and resuscitate him and give him the best chance possible. Once he was stable he would be transferred to Crumlin Children’s Hospital. If he survived the transfer he would need a big operation to move the organ’s back into the correct position and close up the hernia. We were told it would be a long recovery process and could take several months. He may need a feeding tube and oxygen going home.
Trying to process all this was hard. Trying to plan for it was impossible.
Important factors like child care, accommodation, finances and work over whelmed us. Trying to pack my hospital bags was difficult. I didn’t know how much clothes I’d need or baby would need. However, we were lucky to have brilliant family and friends to help. We drew up a babysitting roster for Leah. The Rotunda and Crumlin’s social workers helped organise affordable accommodation for us. Organisations like Hugh’s House and The Ronald McDonald House were fantastic and we’ll be eternally grateful to them. My husband is a Garda and the organisation and his colleagues have been so wonderful and supportive to us. Taking some of the stress and pressure off our situation.
The weeks leading up to Luke’s birth dragged. We still had to get on with our lives. Going to Tesco we’d run into neighbours excitedly asking were we excited to meet our new bundle. Some days I’d be fine. Others I’d get choked up, try and fight back the tears and make my excuses and run to the car.
I was still attending my local hospital Portiuncula and would meet other expectant mammies in the waiting area. We’d discuss our pregnancies and little things like possible baby names, tiredness etc. I’d be fine until subjects like hospital bag packing and visitors were mentioned. Then it’d remind me of what lay ahead for me and my hubby.
It wasn’t going to be the typical two day stay in hospital then home to family and friends and familiar comforts for us. We didn’t know would we be in Dublin for months with our sick baby, separated from our daughter. Or worse, coming home grieving parents with an empty car seat.
Our beautiful boy Luke was born at 11:18am on August 7th 2018 by C-Section. He weighed 6lbs 2oz and was very sick at birth. He was transferred to Crumlin at 3pm. His incubator was brought to my bed side and I got my first glimpse at our lovely little man. It was touch and go for a while but he was a brave little fighter and survived.
After scans it was noticed that he would need an operation as his spleen and part of his intestine was in the left side of his chest. This meant his left lung was collapsed. The Staff in the ICU built up his strength and at eight days old he had his surgery. This was the toughest part as we didn’t know what would happen. In one way it was an easy decision as he would not survive without the operation. Still we had doubt and were worried.
After three hours we were told Luke was back in Intensive Care. We immediately went to see him. The Doctors then told us the operation was a success. Within two hours of the operation Luke’s left lung inflated and was two thirds the size of a normal lung. He was in The ICU for the first four weeks then got moved to the wards.
Ten days later he was strong enough to come home. It was the happiest and scariest day of our lives. We had become so used to our routine and dependent on Crumlin and its little family there. Their support and the security of being there if anything went wrong was all we knew for Luke.
Luke defied all the odds. He came home at five weeks and three days old completely independent, feeding and breathing without any support. No Oxygen, no feeding tubes and no antacid meds.
Although he needed an injection daily for the first few months, he was completely healthy and strong. He is now 10 weeks old and thriving. Although he still needs some follow up care and has a lot of hospital appointments, he is thriving. Every time we look at him we are over whelmed with joy and relief.
Six months ago we did not know would our little man live and if he did would he have a lot of health issues. Our future and his was uncertain. We are part of the lucky 50%. However, there are many parents not as blessed as us. My heart breaks for them and their loss.
Words cannot express the fear and terror that parents feel when their baby is diagnosed as having serious foetal abnormalities. We grieve for the vision of what we thought our pregnancy would be and the healthy, happy child we desperately wanted. The fear of the unknown and uncertainty that our future holds is crippling. How it will affect us, our unborn child and the children we may already have.
The idea of going through a pregnancy and losing a baby in the end. Coming home empty handed and trying to move on is impossible and shattering. If a baby lives but is very ill and needs a lot of extra care it will impact on all the family. Will one parent need to leave their career to become a full time carer. Will they be able to still pay their mortgage? If they have other kids can they juggle everything and give their other babies all the love and support they need. This is just some of the worries parents have to process when getting the news of their baby having a foetal abnormality.