This is a follow on post from our blog post The diagnosis part 1. I hope this can help someone out there one day if they are experiencing the same situation that we found ourselves in. I could only find one blog on the internet written by another woman with a fetus diagnosed with an echogenic bowel. I found it immensely helpful to read what she went through and felt a little more prepared.
When we found out that our baby had a 50/50 chance of having cystic fibrosis we had a few options.
1. We could wait it out and do nothing then our baby would have the guthrie test at a few days of age to see if he had CF.
2. I could undergo an amniocentesis and get a solid answer to whether or not there was the CF gene mutation in bubs DNA, meaning he had CF.
We chose option 2, we just had to know. Not knowing was an absolute emotional roller coaster. It went from the devastation that our baby was sick to the complete opposite thinking why are we so worried?! It may not be anything!! I began to mentally prepare myself for a potential amniocentesis. This wasn't a decision we made lightly and there was a lot of questions that we thought through before making the choice we did. With any invasive procedure during pregnancy there is a risk of harming the baby or at worst causing damage that could lead to miscarriage. Having an amnio at 28 weeks isn't common and considering Oli was fairly well developed the risk turned to preterm labour rather than miscarriage.
We had to ask ourselves another curly question. If our babe did have CF we would have to seek permission from the ethics council to abort my pregnancy. Given I was 28 weeks this wouldn't be granted. This was never an issue for us because we knew we wouldn't terminate the pregnancy but then what was the point of the amnio? The role of an amnio is often to seek information & which can lead to the decision of termination. One of my midwife friends raised the question to me, if you know you would keep the baby if he had CF why would you risk your pregnancy and his life to find out? Very true, however we needed to know. We felt that if we had information we could accept & deal with it for the next few months or completely relax because it came back negative. This was still an incredible weight to carry on our shoulders and took its toll on all aspects of our life.
Everywhere I looked I was surrounded by this traumatic decision I was having to make. At the time I was doing my midwifery training. I was working in labour ward and the special care nursery. Emotionally I was an absolute wreck. I was caring for these beautiful healthy babies on a daily basis. Sometimes from mothers who hadn't cared for themselves during their pregnancies yet given birth to perfect babies. In my eyes this was so unfair, I had to learn to separate my work from my personal life. This was an incredible struggle considering I was eating, sleeping, breathing midwifery.
The day came for my amnio, I wasn't scared for the 2 weeks leading up to my appointment however on the day I had butterflies and was really quite nervous. I waited in the interview room with Ian & my mum, making nervous chatter as I always seem to. The midwife arrived and started asking me questions. I was taken aback at how blunt she was, one of the first things she said was '...you do realise this can result in miscarriage' I was thinking you think i haven't CONSIDERED that!!! How insensitive! She then proceeded to comment '...I hope you don't like that top because we will stain in with our wash' Geez someone woke up on the wrong side of the bed this morning!!!! I was learning so much about how to treat patients in the future!
For some reason I assumed that the amnio would be done under a local anaesthetic. I mean they are putting a big needle in my belly surely numbing it would make it better?! No, apparently the local needle hurts more and takes too much time so its just straight into it!!! The position I was in made it it hard to breathe but having a needle in my big belly too, wow that was on another level! I was holding my breathe and wiggling my toes for the entire five or so minutes! If I was talking to someone who had to undergo the procedure, I wouldn't say it hurt...it was weird and uncomfortable but I wasn't in pain. It was over really quickly and I was able to leave after about 10 minutes. I was told to rest for the next few days and if I had any problems to come straight back.
The following few weeks I had braxton hicks quite often. Especially when I was at work on my feet all day. I found that continuing on at work and with my study was hard but in the end it provided a lot of support and took my mind off things. My colleagues who knew what I was going through were so supportive and being midwives they really understood. While it was difficult being surrounded by mums n bubs, I couldn't have asked for a better place to work with compassionate, beautiful women.
After my amnio and a few days rest I got on with my life. There were hours, almost full days that would go by and I would forget about the test results. My mum had been staying and looking after me following the amnio. We went out for a coffee and to buy some baby things when I saw a missed call on my phone. I was in complete denial, I googled the number and it was the hospital. My mum MADE me call back but I was quite happy to wait, it was Friday after all..I had all weekend to live in lala land!! I think I was in denial because I knew the truth. I knew there was a problem, motherly instinct I guess.
When I finally reached the doctor she got straight to the point, saying my test results were back and that they were positive. Our baby had CF. My stomach dropped, while I felt I knew the truth it was still an incredible shock. My face must have said it all because my mum started to well up too I think! The doctor asked how I was feeling...I don't like it when people break bad news and then ask how you are feeling! Obviously I feel like complete shit! I asked where we went from here and she told me we would be referred to the children's hospital and we could go and have a consult with the cystic fibrosis team. I hung up the phone and burst into tears. I didn't have to explain to mum, the news was pretty obvious. I called Ian who was at work and tried to tell him. It took me about five attempts to call him with my mum urging me, I could hardly breathe while I was bawling let alone talk and break bad news! It broke my heart telling Ian...it was so hard. I still remember my mum phoning my dad and telling him at the time. I spoke to my dad and he said so whats happening? (he obviously knew! he was just making me talk!) I said the results are back...positive for CF. I'll never forget his response, he said "...so? it doesn't change anything, its still YOUR baby, you will still love it just as much, we all will. Regardless of what it does or doesn't have, its your baby and it will be normal. Nothing will ever change that" At the time it didn't make me feel that much better but looking back its completely the thing that I wanted to hear.
The night we found out we went out for dinner, just the two of us. Ian felt the baby move for the first time that night. A blessing really. Like a little sign to say hey what are you all so upset about!! I'm heeerrreee!! I'm not a scary diagnosis of a chronic illness, I'm your first beautiful baby!
The following weeks were filled with ups & downs. we went to the kids hospital where we met our consultant and CF specialist nurse. We got told that it was very uncommon to be there without the baby!! Picking up CF antenatally is rare, I think we were the first couple in 5 years to find out at the maternity hospital we were booked into. I asked the respiratory consultant if the baby having CF would affect my birth, i.e. preterm labour, complications, need monitoring etc. When he told me no I was relieved, I had planned to give birth with my private midwife in the birth centre or at home. I went to my specialist for a check up where on the scan Oli's bowel remained in loops and twisted. I mentioned my birth to her, she reassured me I wouldn't be considered 'complex' however I will need to give birth here in case of any complications. In my head I scoffed...complications! HA! Ive had enough complications already, I may not have the water birth I was planning but Im sure as hell not going to have a complex birth!!!
Well...2 weeks on and I was in labour at 34 weeks, being told I had polyhydramnios and the baby had ascites and would be born TONIGHT. I thought we had it tough when we went through the amnio and the confirmation of CF, but our lives were about about to be turned upside down. Things had taken a turn for the worst and this sick little baby was coming. Ready or not.
Read my birth story here to see how everything unfolded.