Having gone through 2 deliveries already, I felt I was becoming an expert on making a birth plan.
Both were very different experiences; Ethan an early induction ending in an emergency section and Megs a natural hospital delivery, needing vontuse at the end = 3rd degree tear!
This time I planned a home birth and to go with the flow. What I learnt was babies have their own agenda, rarely things go to plan so why make one any further than location?! I knew I could deliver drug free (well aside from a few puffs on the Gas & Air) so go for it.
My plan this time was again disrupted when we found out that baby had CHD. My natural home birth idea suddenly became the complete opposite – medicalised central and Drs galore! Goodbye any glimmer of dignity I had left.
I still felt I could have some control though over it and possibly still have a fairly natural delivery. I also believed there was no point in writing anything specific as I am aware of the drugs on offer, the possible assistance used and overall that things could go any way, if she became distressed and so was even open to the fact it could end in a section.
Now we find ourselves in completely different situation, a baby that not only has serious health conditions but a “not compatible with life” syndrome. Writing this birth plan is necessary, whilst we still have to wait and see we also are faced with major decisions of what to do in various scenarios. We have to consider the painful reality that she may be still born and how we want to proceed. We have to decide about resuscitation and things you probably would never consider needing to think about when going to birth your baby.
I have spent the last few days writing a VERY specific plan in preparation for a meeting we had today with our consultant and a consultant from Neonatal intensive care. I knew it was going to be a hard meeting and so yesterday we headed to the coast for some family fun to take our minds off it all – and yes we FINALLY took a ride on the pirate ship (one more off the Summer bucket list). It was such a great day, we met up with my sister, niece and mum and lots of summer fun!
But today that seems so far away…after a 45min anxious wait in fetal medicine, we were called into the ‘counseling room’ !! We went in with THE goal “We desire our baby to be born living, taking the risk of early induction if needed, and that she be sustained until family have been able to meet her”.
We came out feeling pretty depressed and a little angry too. The plan we had to sustain her life “isn’t something they normally do for babies with Trisomy 18” !!!! Her care plan is “comfort care”, in other words they will make her comfortable whilst we wait for her to pass away. They wont put her on a ventilator nor insert feeding tubes, they wont even give her prostaglandin to help her heart. Our hopes of having our baby for a few weeks were smashed! Irrelevant of whether she can breathe on her own or feed a little she is “Duct dependent”, without the hormone ‘prostaglandin’ administered to her we potentially face her duct closing within 24-48hrs and her suffering cardiac arrest.
We are speechless, confused, sad.. the list goes on. We are deciding if this is how it is, or if there is more we can do. I wont be monitored in delivery because the likely-hood is baby will become distressed with having such severe CHD and they “tend not to intervene”. We feel because of the syndrome she has they really aren’t giving her a chance.
We now wait for them to send us the “comfort care plan” and in 3 weeks can bring up anything we don’t agree with or want to change. I literally am so heartbroken that this is where we are currently at. I hoped so much for my little girl, even in her short life and I feel over time I have been robbed of it all. We are both GUTTED!!