Thea, my CHD warrior is my 5th baby. She was born on 11th January 2007 in Sheffield, United Kingdom.
A tale of all the experiences and feelings the mother felt before and after giving birth to a blue baby.
Mine’s a strange story, almost, in that I could of had it diagnosed in pregnancy but the hospital messed up. A part of me is glad that I didn’t have more to worry about throughout my pregnancy, because I have a blood clotting disorder which causes many problems.
I had regular scans in pregnancy and at 11 weeks it was discoverd I had a thickened nuchal fold (6mm, normal is 3mm). I underwent a CVS which came back clear and that I was having a girl. The consultant said “If it wasn’t genetic then it may be something structual like a heart defect and he would scan me at 20 weeks in feto-medicine”. That’s where they messed up, and when I went for my scan I was just given a normal ultrasound whereby she just looked for 4 chambers. I left thinking all was well.
When I had my planned section I was in HDU under a senior midwife, thank goodness. After about 3 hours, she thought Thea looked cyanosed and was cold. She tried to warm her with the heat lamp and gave her oxygen but it did nothing. She wasn’t happy by then and said “she was taking Thea down to SCBU to get checked out”.
My husband went with her and it seemed ages that they were gone. I had my eldest daughter (18) and other family members with me when they came back but with no baby and to say what was wrong. I could tell by the look on my husbands face that is wasn’t good. The peadiatrician consultant explained it – I didn’t really react. I just sort of felt numb… maybe it was the morphine! He explained once Thea was stable, they would need to transfer her 50 miles away to the Leeds Heart Center.
I lay there, while my family tried to take in what he’d said. However, my Mum who had been there earlier had by this time gone home with my father and youngest son (13) thinking all was ok. My eldest daughter (18) was still there as well as my youngest (3) and my mum-in-law. They sorted out a plan on what everyone was doing. The plan was that my husband would take the youngest home and then meet up with mum-in-law to drive up to Leeds. My eldest daughter would meet them at home, feed, bath and put Sophia to bed but first she would call on her Grannie and Grandad and tell them the bad news. Mum-in-law also said “she’d pop in on the way”.
Not long after the consultant came to say that she’d been given prostin to re-open the arterial duct and that she’d stopped breathing, which was a side effect. I could tell from his face that it must of been touch and go and that she’d been put on a ventilator. Thea’s sat’s had been 20% at one point, which is dangeroulsy low. Once she was stable, they would transfer her but before they transfer her they would bring her to me to say goodbye. She came in this big mobile unit and I could just about touch her leg and then I sobbed.
I lay there as my family also tried to take in what had happened but then they all went. It was horrible being left on my own, because other mother’s kept coming out of theatre and then going with their babies up onto the ward. In the early hours, they decided to move me up onto the ward but I was wiped out on morphine and I fell asleep only to be woken by a baby crying. I looked to my side and remembered mine wasn’t there….. that memory is so painful.
I was transfered around 1pm to Leeds and was left alone in a single room. I sobbed and even though I was told someone would come and take me to see Thea, I just upped and left not knowing where she was. God knows how I walked so far but I found neo-natal and through my tears managed to explain who I was looking for. The nurse took me down there where I saw a much better colour in my baby but she didn’t look like mine and I felt empty. I didn’t stay long. I rang my husband later that night, who was at home with the other children and said “I wanted to come home”. I never settled wherever I was and just felt like I was in this bubble. I guess this is what you call shock.
Thea was moved up to HDU and then into a side room at 5 days old. We sorted something out with family for our other children and pets, then got a family room at the hospital. The day before her sugery I was in tears most of the time. It felt like it would be my last day with her. The morning of the surgery we tried not to let it show to our 3 year old, who was staying with us. She was with us because we felt it would be more upsetting being split from both of us for her. I put Thea in the tiniest hospital gown I’ve ever seen and just waited. At about 8 a.m. the nurse came to get her and again asked “If we wanted to walk to theatre?”, which we declined. Handing Thea over and then hugging my husband, while we sobbed, was heart breaking. I knew she’d be gone for about 8 hours and I just couldn’t sit in the hospital so we once mum-in-law had arrived, we went around Leeds shopping. It seems strange looking back at what we did and it was so surreal at the time too. Every so often when I thought about it, I felt like being sick. I stood holding some new baby clothes and wasn’t sure whether I should buy them…incase if that makes sense?
We got back to our room about 4pm and the phone rang. The nurse up on the ward said “Thea was out of surgery and we were to go down to ICCU”. I asked “If she was alive?” but the nurse didn’t know. We went down and were shown into a room, where we waited for the surgeon. We seemed to be waiting for ages and it felt like the worse feeling in the world…. like immnese pressure pushing down on me. A part of me wanted to get up and run, as not knowing bad news was better than knowing at all, if that makes sense. When the surgeon eventually came I was scanning his face to see if I could tell anything. He started to explain how everything had gone but I just wanted him to say, she’s alive and then tell us. Apparently when she was put to sleep, it was a bit scarey but they managed to stablise her. The operation went well but they had to stretch the coronery artery a bit and he was happy with the result. Then her heart was sluggish to get going but when it did it got better and better. They’d left her chest open too but hopefully they would close it before long. So, then we went to see her. I just stood and stared and reached to touch her. She was like marble and I pulled my hand away quickly….she felt dead. I am guessing she was cooled during surgery. Thea remained stable and they closed her chest the next day with no hitches. She continued to do well and was soon off the ventilator and up on HDU, where I could feed her for the first time. I cried, as she was desperate for a drink of milk bless her. She only stayed in there a day, before being put into a side room, where I could stay with her, though I didn’t and stayed in the family room. I think they realised I was torn between staying with her and Sophia, so they put a travel cot up for Sophia in the room, which she just fitted in nicely and we both stayed there till Thea was ready for home. At 3 weeks old, we came home as she was very well but I was emotionally drained.
I suffered post traumatic stress and have had help but two years on I’m still not dealing with what happened as well as I’d like….not sure if that normal?
Thea is so lucky compared to other’s but I can’t help how I feel. This happened to me at a very vunerable time but I am thankful Thea will not remember it.
Thea was born with Transposition of the Great Arteries (TGA) but the operation she had was completely different to the one Hazel had back in the 70′s. Thea had the arterial switch operation which reconstructs the heart to a normal situation both anatomically and functionally. Hazel had the Mustard operation also known as atrial switch operations which creates a physiologically normal heart (deoxygenated blood goes to the lungs and oxygenated blood to the body) but leave the right ventricle as the systemic ventricle. They also require a complex “baffle” within the atrium with a large amount of suturing necessary.
Cyanosed = (cyanosis) A bluish discoloration of the skin and mucous membranes resulting from inadequate oxygenation of the blood.
Feto-maternal medicine unit = Most pregnancies are normal and healthy, but all women have some risk of having an abnormal pregnancy. Pregnant women with chromosomal, congenital abnormalities and other complications in the pregnancy go there.
CVS = Chorionic villus sampling, a procedure for first-trimester prenatal diagnosis.
HDU = High Dependancy Unit
ICCU = Intenisive Cardiac Care Unit
TGA = Transposition of the Great Arteries
SCBU = Special Care Baby Unit
Written by: Liz Barber-Lilley, 2008