Louise

Age at interview: 32

Age at diagnosis: 26

Brief Outline: Louise was expecting her first babies, twin boys. At the 20 week scan, one of her babies was diagnosed with a congenital diaphragmatic hernia (CDH)*. He had surgery and is now 5 years old.

Background: Louise is a sales account manager. She is married with twin boys.

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Louise was expecting twin boys. At the 20 week scan, the sonographer identified that one of her babies had a congenital diaphragmatic hernia (CDH)*. Louise and her husband were given some counselling from the fetal medicine consultant and were told that they would have to wait until the babies were born, and then their son would need surgery. Louise developed pre-eclampsia and had a caesarean section operation at 35 weeks. Both babies were taken up to the high dependency unit, although their other son did not need to be there for long as he was fine. 

Louise and her husband were told that their son would need a repair operation on the hole in his diaphragm but had to wait until he was stable and strong enough to cope with the operation. When he was 9 days old, he was strong enough. It was successful and he was transferred to a closer hospital after 4 weeks. He was allowed to come home at 8 weeks old. He had another operation when he was three years old to remove the pig skin that had been used in the original operation to repair the hole. He was 5 years old at the time of the interview, at school and progressing well.

*Congenital Diaphragmatic Hernia (CDH)
A hole in the diaphragm, the sheet of muscle that separates the chest and abdomen.

Louise waited three days for her son’s diagnosis for congenital diaphragmatic hernia (CDH)*, and then she wanted to understand his chances of survival.

I think it was three days but it could have been two days; it seems like an eternity to find out what, what it was. And I think I learned about myself in that sort of situation I wasn’t interested in all the people trying to care for your feelings and things, I just wanted to get straight to the end and say okay, what’s the prognosis, what’s the odds of one survival or two that he’ll have to live with something for the rest of his life. So we went to the [hospital name] after that where they explained the situation in a lot more depth we were put under the consultant [doctors name] in the [hospital name] who was marvellous, really great. I remember keeping ask, keep asking what were the odds, the percentage and they were very reluctant to give us any sort of, you know, 75 survive 25 don’t they said its very much an individual case by case basis they have to have to a better look at it, monitor him as he grew in the womb they confirmed obviously that [first son] was fine he didn’t have that. I was trying to think what happened, we had lots of appointments in between like I said just to keep track with scans they were scanning his heart and his lungs because his intestines were actually growing up in his chest so they were concerned for his lung and his heart. they gave us an amino they thought it could be Downs Syndrome so they explained the risks of that, that we could lose the both of them if they done that I think by that point we had to know yes or no whether he was Downs Syndrome so we went for that and we found out he wasn’t, which was great. I can’t think of anything else.

* Congenital Diaphragmatic Hernia (CDH)
A hole in the diaphragm, the sheet of muscle that separates the chest and abdomen.

Louise said she felt her pregnancy wasn’t normal, she felt like a piece of meat being prodded the whole time.

I don’t know if its normal in pregnancy you just end up feeling like a piece of meat, because you’re getting prodded and things all the time I wonder if they did rush me down, I think they were going to deliver me and they rushed me to the delivery suite because something was not right and they pumped me, and I had something in my arm and I had two things in, I thought they were going to deliver me, deliver me because I remember ringing my husband and saying they were rushing me down and he broke the car trying to get to the hospital but they didn’t. But at that point I felt so, I think exhausted and drained I just wanted to sleep and let them carry on. I don’t think I felt well at the end, they were monitoring my urine, I had protein in my urine or something as well it felt like I didn’t have any fight in me at that point because I was feeling so ill as well and I knew what was coming when they were actually going to be delivered. I was still hopeful I refused to believe that he wouldn’t make it I thought he has to make it.

Louise’s twin son was diagnosed with a congenital diagphragmatic hernia (CDH)* but she had been told they wouldn’t know until he was born what his chances of survival were. Five years on, she still finds the memory of her first visit in NICU upsetting.

So they told you he had a heart in his, sorry a hole in his diaphragm.

Yes.

And did they say if he did make it, what was the, was there going to be a problem was he going to have surgery or?

Yes, they said when he was born they wouldn’t know pretty much until he was born what, you know, until they could examine him, how serious it was, they could see it was a pretty large hole because of all his intestines and things were up in the lung, in the chest area. They advised that after he was born he would need to get him stable and they said all the baby’s don’t, some of them don’t even get to that point where they’re safe and healthy and strong enough to operate on, so we knew the first few days were crucial. And they actually woke me up, I had a caesarean section at 35 weeks because of my pre-eclampsia they, I had the steroids and the works. They, after we had the caesarean they were concerned for both of them obviously they were premature [first son] didn’t make a sound so they thought there might be something wrong with him but he was just being a little bugger and he started screaming as soon as they rushed him off to the ward, the high dependency ward, he was fine. They woke me that night to take me to the high dependency in a wheelchair to pretty much say goodbye because they said it didn’t look like he would make it through the night. I was on the ward, my husband had stayed and, I think he was sleeping on the sofa somewhere, they found him somewhere to sleep so he was there which is good. I think, at that time I was very much like a zombie. I think because I didn’t know the outcome I didn’t let myself get too attached, sorry I’ll get a tissue.

No, no worries at all. 

This crazy after all this time.

* Congenital Diaphragmatic Hernia (CDH)
A hole in the diaphragm, the sheet of muscle that separates the chest and abdomen.

As they left the hospital, Louise started sobbing. They were happy tears, but she also felt daunted to be bringing her twins home.

And what was it that he needed to achieve before he was allowed out? Breathing on his own. 

Breathing on his own at first he was still getting tube fed and then feeding and then there was sort of normal baby things that they need to achieve before they come out, feeding on the bottle.

And was that relatively easy or did it take a?

It took a little while but that was, that was fine, I think after he could breathe we were like this is normal baby stuff now and fine we were happy at that point we just couldn’t wait to get him home with us so we could get started.

Yes because it must have felt like everything had been on hold.

It was awful yes it’s, it’s but you see the people coming in with balloons and teddies and you think well that’s not going to happen. But I remember when we took [second son] home we were so relieved and excited we couldn’t wait to get him out of there but we were sitting in the car on the way home and I started sobbing and my husband was like, ‘Are these happy tears?’ I was like half yes and half no. I’m so scared we have two little babies to actually look after now after all that and it was like we’ve got to deal with the practicalities now of actually looking after two babies which I think because we were so ravaged from the experience we were like how are we going to cope.

Yes, which of course I’m sure you did.

Yes, yes, you do.

Louise remembers how worried her mother and sister were when her son was ill in hospital.

Yeh my mother was very worried, I think [husband]’s mother was very worried as well my mother’s perhaps a little closer because you see I’m her daughter and things I think everyone sort of struggled with it. I remember my sister, now she’s my twin sister, she lives in Bristol and she said once she broke down crying in work and they said what are you doing here get home, so then she came and like I said it was a struggle for them because they couldn’t see us a lot either because we were living in the hospital and they would visit us there in the canteen or something but they couldn’t see the babies and when we were with them we were like great lovely to see you but we’ve got to get back to see the babies. So I think they felt probably out of it and we couldn’t do anything to help them with that. But they were trying to be there for us which they all did their best to be. I think as a family we struggled with it.

I think it’s inevitable though isn’t it?

Yeh and then they all seem worried about us because they could see us stressing and worrying cos I think my mother said once she’s, obviously she loves her grandchildren, she didn’t know the grandchildren obviously at that point but she was like but you were my baby and I’m worried for you and I want you to be oaky. Now she loves those little boys more than anything.