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New Zealand experience...

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New Zealand experience...

Postby Neil » Sat Jan 12, 2019 2:11 pm

Hello from New Zealand. I hope that by sharing our experience that we can provide some support to others, both men and women. It has taken nearly 2 years to get my head/ heart sorted to the point of writing this, and I have tears welling up in my eyes as I type. Ours is not a common tale.
Parts of this story may be very upsetting to some readers, but all events are true and are written as chronologically best as I can recall. This is not a critique about medical or nursing or midwifery. If the moderators read and decide that this is not the best place for this post, then all I ask is it to be edited if possible to meet the site criteria, or moved to another forum. Any feedback/ comments are welcome...
So..,
It's February 2017, a Friday night and my soulmate has just had a positive result. She had been feeling tired and missed her regular period by a couple of days. We are scared and delighted, I am nearly 50, and she's mid 30's. I am working, and my dearest has just taken a year off work to become a full time student and to finish her degree (She's been studying part time over the past couple of years). We are both fairly fit, as we love multi-day hikes around the hills and mountains of New Zealand. It would be our first child. Off to the GP Monday afternoon, confirmation urine and blood tests are all done, and a check ultrasound scan booked the next day. Maternity cover in NZ is done by the GP for the first couple of weeks then a MIdwife takes over, with GP/ US referrals as required. Most Maternity care is private care, and have facilities away from the hospital and are not part of the DHB. So we now had to find Midwife who would help us.
At the ultrasound, there was a potential issue, there was a large amount of blood in the womb. Not a good sign... potentially life threatening to the growing foetus depending on what was causing the bleeding. Cord? Lining?. Caution was advised, and certainly not the reassuring comments we were expecting. 6-8 weeks was the estimated age of the little one.
By Wednesday of that week, morning sickness had kicked in with a vengeance. My darling was vomiting and retching not just in the early morning, but randomly throughout the day. Nothing she tried helped. On Thursday we were back at the GP for help. "Hyperemisis Gravidarum" is the culprit, and anti-emetics are prescribed. Cyclizine and metaclopramide. Except they make her feel all dizzy and spaced out, and she's still retching and vomiting -not good.
And then she had a vaginal bleed overnight. A call to the GP surgery results in a blunt response of " Sounds like you are having a miscarriage. Call your midwife."
To which we replied, we didn't have one, we'd only just found out earlier that week.
To which the response was " Oh, really, you should have sorted that out. Phone this number and request an emergency scan. Tell them to send the paperwork to Dr X and I'll get her to sign off on it." End of conversation.
So, a few hours later, the scan is showing an inflated womb, a larger proportion of blood present, and blissfully unaware foetus apparently in cautiously good health. Not a miscarriage, but blood leaking out from the womb area. Go figure...
My darling is becoming wretched, not only is she already physically tired from the vomiting, lack of sleep, body changes and emotional changes of becoming a mum, now she has the additional worry of bleeding out and losing the baby as a result.
So over the next couple of weeks, we have several more visits as a result of vaginal bleeding, and each time we prepare ourselves for the worst case scenario. By now we have a lovely midwife, who is as concerned as we are. My darling is looking positively haggard, gaunt, but 100% focused on helping baby get through to the end. By now I can't cook at home, as the smell of food just sets her off. Ondansetron has been prescribed, but my darling insists on holding off until the risks of cleft palate etc are minimised.
For me, it's agonising. My darling soulmate is fading from me in front of my eyes, suffering so much, and I can do nothing to help except cuddle her, tell her I love her and that we'll get through it together. I haven't actually become emotionally attached to the idea of becoming a father because I'm more worried that I'll be a widower! I was a Registered Nurse before changing careers late in life so I had some ideas of the risks involved.
My bosses and team members at work do their best to support me, giving me all the time I need to get to the appointments - it's a small business and word gets around. By now, I'm home very lunchtime, do all the housework, grocery, cooking when able, running off to the local fast food outlet 24/7 whenever she feels well enough to eat. Our diet is suffering and I'm piling on the pounds. Our relationship is beginning to suffer as fatigue and stress take their toll.
And then the pain starts. Lower back. Randomly, short, sharp pain. First emergency room hospital visit, straight though, IV drips, pain control, Doppler scans... IV Ondansteton is given, as my darlings health state is of more immediate concern that the baby. By now we can predict the questions and even the order they come in.... Ages, planned or unplanned, IVF or "natural", alcohol, smoking, recreational or hard drug use (no to all of them). Miscarriage for certain, they say. Another U/S scan for confirmation. No need to rush, it happens sometimes. Sorry and all that.
Except by now we are not convinced that "Bump" is either causing the pain/ bleeding or being harmed. Every scan to date has shown "Bump" is getting bigger, developing normally and showing no signs of distress. I too had become a believer, "Bump" was going to make it, but only if my dear darling could survive the experience. That we were not quite so certain about given how things were deteriorating.
Sure enough, yet again the scan showed a growing feotus, and nothing else. Again the same round of questions.
The pain continues, and more medication is prescribed. A lengthy and intense discussion is held as to what is causing the problems. Cancer? Family history, but nothing showing. Bleeding umbilical cord? Leaking placenta? Blood tests are all reasonable for a pregnant person, some are slightly elevated, some are lower than usual, but given my soulmate's physical condition, understandable.
And then my darling mutters "Heterotopic pregnacy... It has to be." But nothing is showing on the scans.
We are sent home without any answers.
By now, the midwife has been discussing our situation with the hospital team. They are getting very concerned about my darlings health... By now I'm turning into an emotional wreck. My sensible, rationale, fun loving soulmate has become possessed by one purpose- getting "Bump" through to the end. Despite the pain, bleeding, nausea, vomitting, dizzyness, fatigue.... all that mattered to her was "Bump". "Bump" was a fighter, and so was she, they were going to make it to the finish together or not at all. To her, that all made perfect sense. Me, I was terrified at losing her, I was horrified at what she was experiencing, at the toll it was having on her.
And then in week 12, I'd had enough. It was 4am Tuesday morning, my soulmate had been lying in bed all weekend in agony and I lost the plot. I told her we were going to the hospital either in the car, or I was getting an ambulance. To my surprise, she agreed and we were in the emergency rooms by 4:30am. More IV fluid, more medication, more questions, more blood tests, more concerns about cancer... no answers, but this time we were not leaving without an answer. What was literally killing my soulmate?
About 8am, we were taken to the U/S suite for more scans. the staff took one look at at my darling lying on her trolley, glanced at each other and didn't waste time getting us into a room. This time it was an older, senior tech, and she asked all the same questions, and took her time doing all the usual scans, being very focused. Again, nothing showed. "Bump" was still there, the blood was still present, nothing looked different. She excused herself from the room and came back in shortly. she again went through the questions, planned, unplanned, IVF, natural, etc. then she asked permission for a vaginal scan to have an alternative view of the womb. ?????????
Of course, my mind was racing ahead to the C word. My darling was too exhausted to care. Permission was granted.
And then as the examination progressed, she slowed down and kept returning to the same dark patchy area. And then the questions all over again.... IVF or natural? Planned or unplanned?
Subject to confirmation by the doctors, it looked like there was an second, ectopic pregnancy, that had ruptured the tube, bleeding into the abdominal cavity and down the tube into the womb, she explained.
So, not cancer then. A twin. Heterotopic pregnancy just like my darling said all those weeks ago. A twin. We had joked often about the possibilities of twins as it runs in both our families, but to find out this way? I was blank, too much to take in. Mind racing, surgery, risks to my darling, risks to "Bump', what next to complicate things further.
And then the waiting began, more questions from the doctors, a sense of disbelief - either at our answers, or the circumstances. No IVF? No fertility enhancement? "Once in a career experience.", "Never seen it in over 25 years of being a doctor...", "Rare as rockinghorse [censored word]..." is a phrase I will never forget from a senior physician. As if my darling having cancer would have been any better an outcome?
We are transferred to the care of the Obstetrics team, discharged from the emergency room and end up in the day surgery unit.
Nobody comes until 5pm. And then it's all action. Apologies are made at introduction, lifesaving surgery for another woman, etc.... No time to waste, my darling is next on the list, but first we need to talk about the risks... bleeding out, blood transfusions, death and that's just for my darling...
"Bump" is also at risk, womb being cut by accident, bleeding out, infection, shock, anasthesia risks, it will be minimally invasive, keyhole surgery, but until they make the first incision for the camera, they wont know if they will harm the feotus. And so on....
We have our answers already prepared. After all, we've had all day to discuss it. We are reasonably sensible people, and the internet helps. But all we can cling to is our love for each other and have faith in a good outcome. But for me, it is love for my soulmate that takes precedence.
Two hours later, my darling is in the operating room, I've said I love you as she drifted to sleep, neither of us knowing what could happen in the near future.
And then I am outside, phoning her parents, explaining what has happened. We had discussed this earlier in the day as well, predicting each parental response and having a plan to stop everybody flying in from all over the place. My darling comes from a VERY large and loving family!
Again and again I have to explain about the twin, and how it had gone wrong. No, no point in coming at the moment, she's in surgery already, yes, there are risks... What are they..? Will she be ok? And "Bump"...
We were fortunate/ blessed/ rewarded for our love/ call it what you like. We now have a 1 year old daughter who is thriving.
Most of our family still don't understand the sense of loss that we have, or how bad things were throughout the pregnancy- there were further complications towards the end. My soulmate has received hours of counselling and support, and we have spent hours comforting each other, but it still hurts for both of us. But, there is no external support for me... No group sessions, no counselling, no outlet of emotion, no closure process. It fades for a while, then pops back in, the sense of helplessness, the awareness of my darling's mortality, the frustration that nobody was listening to the person, but was relying on technology, right up until the point where a single individual persevered because they KNEW that something wasn't right because they were listening and looking at a person, and not a machine.
But, I know and experience love every day, in the arms of my darling soulmate and my daughter. And one day, we will have to explain the scars on mummy's tummy, and how my daughter got her name.
Neil
 
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Joined: Sat Jan 12, 2019 9:56 am

Re: New Zealand experience...

Postby EPT Host 20 » Mon Jan 14, 2019 9:41 pm

Dear Neil,
I am so sorry to hear of your ectopic pregnancy and loss, From your words, I can imagine how frightening the experience must have been and I am sorry you and your partner have had to go though this.

The feelings you describe are very understandable. You have had so much to process, the ordeal of diagnosis, surgical treatment, losing a pregnancy, concerns about your wife and concerns about the future. Any one of these is hard to contend with and putting it all together is immense. After a frightening ordeal like ectopic pregnancy, some people find that they suffer from Post Traumatic Stress and symptoms can include anxiety and not being able to focus on everyday things like work. There are a number of avenues that you could look into to get the help that you need.

We at the Trust believe that talking through what happened and your emotions as and when you can helps the healing process. We operate a helpline service and there's no pressure whatsoever but if you would ever like the opportunity to speak over the phone to someone who has been through a similar experience, do feel free to call, details are below. I understand that you are in NZ so we can exchange emails too, if you prefer that route. We'll simply be here for you, however you wish and for as long as you wish.
I am not sure what your health system is like in NZ as we are a UK based charity but could you find some information on counselling in your local area?

I guess we will all cope slightly differently following a traumatic event such as ectopic pregnancy.
Personally, I didn't cope very well, I struggled with emotions for 2 years before contacting the Trust.
I found comfort in reading others posts. I didn't feel so alone in how I was feeling. I was also advised to try counselling, which I did. Following this, I understood that although I would never forget my pregnancy or baby, I learnt to accept what had happened and crucially understand that it wasn't my fault.

Experiencing ectopic pregnancy can be very isolating. It is a frightening experience. Like you, I reached out to the Trust for support and we will be here for you to lean on for as long as you need.
Thank you also for taking the time to share your experience on the forum, it really will bring comfort to so many, knowing they aren't alone in what they are feeling.

Sending much love and warm hugs to yourself and your family,
Karen x

The Ectopic Pregnancy Trust
Registered Charity Number: 1071811

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