Thursday

Madeleine and Juliette

My name is Jocasta and my family consists of my husband Wayne, eldest daughter Trelise and monoamniotic twins Madeleine and Juliette. I’m 33 years old and live in Wellington, New Zealand.

In January 2007 I discovered I was pregnant with what I thought was our second child. In the past I had a missed miscarriage so instead of waiting for an ultrasound at 12 weeks – which is standard in New Zealand we decided to ask for an early scan at 8 weeks to make sure everything was on track.
We went for our ultrasound and were absolutely shocked to be told that we were expecting identical twins. I don’t remember being told directly that the babies were monoamniotic but I did do an internet search the next day and information on monoamniotic twins came up. I looked at my ultrasound and was concerned that I couldn’t see a membrane dividing the babies. My neighbour was training to be a midwife and I checked with her – she couldn’t see a membrane either but I used her text books and realized how rare monoamniotic twins are. This put my mind at rest as I figured I just wouldn’t be that unlucky.
New Zealand but Wellington in particular has a midwifery shortage. I didn’t have an independent midwife assigned to me so the results of the ultrasound were sent to my GP. My GP rung and left me a message saying that the babies were looking like being monoamniotic and because of this he wanted to refer me to the High Risk Team at Wellington Hospital.
I did a lot of research in the next few weeks and thankfully found monoamniotic.org. I saw that the statistic’s I had read at first were outdated and my babies had a good chance of being delivered. I saw that there was a window at around 10 – 12 weeks were the membrane is more visible. I already had a Nucal Fold ultrasound scheduled for 12 weeks so I was sure that this ultrasound would show the membrane and we would no longer be monoamniotic.
I went for my Nucal Fold ultrasound and while in the parking lot I received a call from the High Risk Team nurse trying to schedule an appointment and ultrasound with me for the following week. Happily I went up for my Nucal Fold appointment. I ended up with the same Sonograher as I previously. I asked him to re-check for a membrane again and he refused "as it wouldn’t have grown since the last scan". I was so thankful to have received the phone call in the parking lot as I told myself it didn’t matter as the High Risk Team would resolve this.
In the next week or two I had my first appointment with the High Risk Team and it was emotionally really hard. After having an ultrasound and seeing my babies swimming around and then going straight on to talk about the viability was to much for me and I ended up crying through most of the meeting. From then on I prepared myself for the heartbreak of these fortnightly appointments but they were never as difficult as that first one. Michel Sangalli was my specialist and he was really good. Wellington Hospital had only seen 3 other monoamniotic twins in the previous 10 years but they had a good success rate. Michel told me straight up that there was a high misdiagnosis rate but I was not going to be one of these. I found the whole appointment so traumatic and so I’m not sure what he saw on the ultrasound that made him so sure that was going to be the case.
I did a lot of research after this appointment and was very clear on how I wanted this pregnancy managed. I wanted to be admitted as an inpatient at 24 weeks with as much monitoring as I could have. I had read a lot of women’s experiences with battling to get this amount of care and was totally prepared for that battle! Thankfully Michel was totally up with the management of mo-mo’s and there was no question of admission at viability. I did end up changing my mind on viability to be 26 weeks instead of 24.
Until viability I had fortnightly appointments with an ultrasound completed at each appointment. Growth and Dopplers were done at every scan. Every scan was positive with no problems or entanglement seen. Until I felt the babies move strongly the fortnight would pass slowly. The first week after the ultrasound was ok but the next was extremely stressful worrying that the babies weren’t ok. I ended up buying a fetal Doppler off trademe. It was $60 and it totally put my mind at ease. I did think that I would end up being compulsive with it but I only ended up using it if I was worried and it put my mind at ease.
Before admission I really struggled with how much planning to do for these babies to come home. I ended up doing a lot of planning on what I was going to buy without going and buying it. My plan was to go and buy everything I needed once the babies were safely in Neonates but then I wouldn’t have the stress of working out what I needed. I did organize with a close friend that anything I did buy she would return if something went wrong so I did have to face doing that.
Leaving my then 2 year old while being admitted was a mind blowing thought. She attended daycare 2 days a week but I didn’t know how she would cope with me away and how I would cope being away from her. I was lucky that my husband is quite an exceptional man and I knew he would cope being Mr Mom while I was away. When I look back at my pregnancy my endearing thought is the number of sleepless nights where everything was so overwhelming. I was lucky our daycare managed to increase Trelise’s days to 4 and Wayne’s mum came in from out of town to watch her the other day.
I thought my battle with being admitted would be with Sangalli but he was totally on board with in-patient monitoring. The battle instead was with the midwives on the ward. They didn't understand why I was there or even what monoamniotic meant and I was challenged rudely often in the first few weeks of my stay. I didn't feel it was my place to educate them so I complained though the house surgeons who did some education. It did help but still there was misunderstanding and it was really stressful and upsetting. I do have to say that not every midwife in the ward had this problem. I ended up having a friendship with one that pretty much saved my sanity.

My schedule was a CTG (NZ terminology for a NST – it’s the same thing) once a shift or 3x day with a doppler ultrasound once a week and a growth check every fortnight. I would see the House Surgeon and Register once a day and see Michel once a week during the major ward round. I didn't feel like I could take to Michel during this round as there is alot of staff going around with him and I'm quite a shy person. When I had issues I needed to discuss with him I requested through the house surgeon a personal meeting. He was more than happy to come up and talk things through like this. I had steroid shots at 26, 28 and 30 weeks.I was allowed to come and go as I pleased around the monitoring sessions. It kept me sane to have a CTG once I woke up and then go out for the morning with a friend and then come back for lunch and another CTG. I had absolutely no decels or anything worrying so felt comfortable doing this. If there had been anything worrying picked up the monitoring sessions would have increased.Ward 12 at Wellington Hospital is really understaffed and this caused a few issues with the amount of monitoring I was receiving and at first I often had sessions missed. Obviously this caused me much distress - why be there if you aren't being monitored. At 26 weeks babies are difficult but are not impossible to get a good reading on. The attitude of some midwifes left a lot to be desired and I had a couple refuse to continue to monitor me after a couple of minutes. If a session was missed the midwives would not do a catch up - ie 2 in a shift so it means you have a huge gap on each side. I ended up having throwing a wobbly at Jeremy Tuoy (as Michel was on holiday) and asking for permission for me to do it myself. It wasn't hard and I ended up getting better reading's than many of the midwives. I would hook myself up and find the girls get a trace of about 20 mins and then ring the bell to get someone to check it. Because I had been in for quite a few weeks by this stage I had a basic understanding of what issues look like on the trace so if there was anything I wasn't happy about then I would ring the bell earlier. When I started doing this my stay was alot easier. I can’t stress enough that it is not acceptable to have poorly competed CTG’s. They are the only reason you are admitted and the only way your babies are monitored.
I was offered a single room straight away and then in the middle of my stay was transferred to a double room. I should have transferred before as I did get lonely. Sometimes putting up with the snoring of a pregnant woman is well worth it for the company. By the way if you are reading this Sara you didn’t snore that badly!Lucky for us the babies had no signs of distress so we made it to our maximum date of delivery. The girls were 32+2 weeks when they were delivered. On our delivery day there were many emergencies so I ended up waiting until 2pm before the c-section was performed. For someone who had waited and waited for this day for many months I didn’t expect it to be so stressful. Because of the delay I ended up falling asleep and woke up just as the nurse came into our room to get us. This put me into quite a tailspin as it all seemed to happen at once and I wasn’t totally conscious. I was rushed into the operating room at speed and everything happened so fast. When the epidural was put in I mentally just went to pieces and couldn’t stop crying. I will always remember the very kind Anaesthetist who held me and calmed me down while all the prep was being done. My poor husband was pretty much in the same state as me. The section itself was fine and it all went well. The girls came out screaming and were quickly stabilized by the neonatal team. They were in the room with us for a couple of minutes before being taken to neonates. I got a quick look at them as they were taken away and even got to kiss one on the head as she was departing.
We ended up being a rare, rare case with absolutely no entanglement. In recovery I was bleeding to much to be transferred to the ward by wheelchair so was unable to be taken to see my girls. This was extremely distressing and I did end up trying to get into a wheelchair in the ward. Sadly I wasn’t able to without passing out so I ended up not being able to see the girls until 8am the next morning. My husband took pictures and a video of the girls so at least I got to see them.





I thought that we would breeze through neonates. After all the stress of a monoamniotic pregnancy this part of the journey in my mind was going to be easy. It was alot harder than I realised it would be however and I really struggled with it. Both girls had jaundice and were put under lights. Food tolerance was an issue and while Juliette’s resolved Madeleine ended up having an operation for a malrotation (twisted bowel) at three weeks – this was not related to prematurity. Juliette came home first after 6 weeks and Madeleine was a little later at around 7 weeks. It did feel never ending. However I do feel grateful that we were in Wellington Hospital – New Zealand was having a neonatal crisis at the time and were even organizing to send pregnant woman in danger of a premature birth to Australia for delivery. There were many woman around the country that were sent to another centers where neonatal beds were available. However this meant that we were transferred to from the higher dependency rooms to the feeders and growers room early and that’s where we stayed and watched everyone else go home but us. It was pretty endless!

Now that our girls are at home and getting bigger and bigger I’m grateful for so many things. While I would not wish a monoamniotic pregnancy on anyone I would do it again in a heartbeat if it meant having my girls. Without monoamniotic.org this journey would have been so much harder – I used the website as my major reference throughout my pregnancy and I’m so thankful for the time and effort of people involved in this website. I’ve received so much support from others through this site and I feel lucky to be part of the monoamniotic.org community.
http://wayneandjocasta.blogspot.com/

2 comments:

Anonymous said...

Thank you for your story. It is very inspiring. I am a mother of a two year old and just discovered that I am pregnant with identical twins. We originally had identical triplets and have lost one two weeks ago. We conceived naturally and after researching on the topic it seems rather scary for any mother. I am glad that your twins thrived and pray for the same. Thank you for sharing, your story truly touched me.

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