Showing posts with label fetal medicine unit. Show all posts
Showing posts with label fetal medicine unit. Show all posts

Saturday, 29 February 2020

The 16+6 Gender Scan that Ended in Tears

 
Today was going to be exciting, full of smiles and love.

We had big plans. 

They involved excited family members, a proud big brother, helium balloons and conftti cannons.

Today we were finding out if we were welcoming a healthy baby boy, or healthy baby girl into our family this coming August.

The gender scan had been booked for weeks and had been something I was really looking forward to, after all of the official and serious scans it was nice to have something that was lighthearted and allowed me to bond with the little person growing inside of me.

Something that wasn't about high nuchal translucancy, or cystic hygromas, or worrying about the babies health. Just a fun private scan to find out if we were having a little boy or a little girl, something normal pregnant mum's do when everything is going as it should.

I was finally feeling excited after all of the un-certainty of the last month and a bit. I even ordered one of the big purchases for the baby last night, now it was all feeling positive and real.

As Luke was at work today, we decided that we would have the scan and have the gender written down on a piece of paper. We had a gender balloon ready to get inflated and filled, and we were going to find out all together later this evening.

I should have known I was setting myself up for a fall, I should have known that it was all going to come crashing down around me.

We arrived at the scan, I paid the bill and we were called into the same room that I have been in twice before. It started off very light hearted, Nugget's heart was beating nicely and we saw that he or she was still hanging around upside down like at the last scan.

With their legs..... firmly crossed.

I did some jumps, I shook my belly, but little Nugget was not interested and was not about to roll for us anytime soon.

The sonogropher moved onto taking measurements and having a closer look at baby. 

The head, the heart, the femur length and the spine.

We watched Nugget on the screen all the while thinking that aside from them not wanting to give away their little secret, everything else was ok.

I don't recall how she broached it, it all seems like such a blur now. I don't remeber what I did, or even what I said. The sonogropher started rolling off a list off 'differences' in our little baby.

The differences or abnormalities as they should probably be referred to were rolled out one after the other, in the babies heart she had only identified 1 outflow tract and was questioning a VSD (Ventricular Septal Defect) which could mean a hole in the babies heart.

I asked if this was fatal or there was treatment but she couldn't or wouldn't speculate.

Then there was the abnormal posterior fossa and cerebellum topped off with a dilated 4th ventricle in the babies head. I know one of these can affect balance and the 4th ventricle which she suspected could be filled with fluid, could simply be an immature fetus that would dissapate with maturity ,or maybe even be an indicator for Spina Bifida.

Finally she topped this all off with scoliosis of lower spine marked with a ? on the report, again potentially another marker for Spina Bifida?

At the end of all of this she said that she was pretty certain she knew if we were having a boy or a girl, and she asked me whether I want it written down as we had discussed, or given what we had just been told, did I just want to be told?

At this point any real curiosity for the sex of my baby had long since gone, it had been replaced with that all to familiar worry about whether or not my baby was going to even be ok at the end of all of this. 

I told her to just say, I no longer had any desire to make a song and dance out of announcing our babies gender to friends and family. 

'From what I can see, It looks like you are having a girl'.

 We were in love with the idea of a baby girl, Luke had been hoping and so had my Dad for that matter. Our little girl would be the first Granddaghter in our family, but here we were again with so much un-certainty, I just couldn't get excited at the prospect and definetly didn't feel like rushing out to buy clothes.

We were supposed to walk away with 3 scan images and a CD full of all the snaps taken, including 4D. Instead I walked away empty handed without even a mention of any of it. I was too broken to question it. I was trying to digest what I had just been told.

I held it togeher on the drive home, I held it together as I told Luke the concerns over the phone. I fell apart when we pulled up on my parent's drive and he asked 'How did it go?'.

Any composure was now gone and I let the tears roll.
 
I was told not to Google, I was told to just wait and see fetal medicine when they called. Googling is what I do to try make sense and understand what I am being told. Googling heart related conditions when you have no idea about hearts in general is not advised. I left more confused than when I started, I couldn't match any of these anomolies with anything, so I sat there defeated at my keyboard.

I went over the report I was given, and I went over it again. I cried some more, and then I cried some more. Luke called and I balled.

I went around in circles, Leo came out and gave me multiple cuddles, I listened to JJ Heller's Missing Peace on repeat all afternoon and into the evening. It summed up exactly how I was feeling. I cried some more.

Eventualy the tears stopped, but I was very aware they could start again at any moment. 

It feels like the stress and anxiety of this pregnancy has finally got me on my knees, but again I had to remember that where there was life there was hope. 

I will fight for our baby girl, I will be her biggest advocate and number one supporter. I will see this pregnancy through and be strong enough to do what is neeed. I may cry, but I will do it. 

Right now I am thinking positively, I am clinging to the fact baby was in a difficult position, that just because things weren't seen, it does not mean they aren't there. Babies grow and develop at different rates, there are many variations of normal.

So baby girl, you just have to keep on fighting in there, because I am fighting for you out here.







 

Monday, 27 January 2020

The 12 Week Fetal Medicine Appointment

12 Week Ultrasound high NT fluid - Cystic Hygroma
Today (Monday 27th January) we made our way back to Birmingham Women’s Hospital, 6 days since our last visit. I had spent my time wishing the weekend away, eager to get back and make sure that little Nugget’s heartbeat was still swooshing away. 

Having been told I was high risk for a miscarriage, that is what I’ve worried mostly about aside from the potential of a chromosomal abnormality. The thought of getting to 12 weeks and then losing the baby I knew was growing away would be even more soul destroying than our initial miscarriage.

We arrived back at the hospital with time to spare, I had learned my lesson about guzzling lots of fluid before a scan after last time, so I had a small drink in the morning before we left home, and after the 50 minute drive there... I really needed to pee.

I had to go to the toilet at least twice to release a little, as I was getting fit to burst! As we walked into the Fetal Medicine Department first thing on a Monday morning, I could see just how much busier it was in the AM.

Our appointment was at 10:10AM but it was more 10:40 by the time we went in, it wasn’t an issue and we patiently waited our turn. Eventually our name was called and we followed the consultant into a scan room.

I handed over my pregnancy notes and lay down on the consultation table, the gel was squeezed onto my tummy and Dr Thompson apologised for the coldness (not that it mattered as I just wanted to see my baby was ok). 

My tilted uterus appeared on screen, and then Dr Thompson played the baby’s heartbeat straight away as if he had known that I had been feeling incredibly anxious that it wouldn’t be there. The swoosh swoosh of our baby’s heartbeat instantly reassured me and then he got straight down to bringing baby into view.

Having a retroverted uterus meant that it was hard to get a clear image of baby, which of course makes it harder to do all of the checks and measurements that were needed. 

Dr Thompson stayed incredibly quiet throughout, but I had a screen of my own to watch baby flipping around on screen. I was told that it may be beneficial to completely empty my bladder to see if it would provide a better view, at this moment the placenta was posterior and wouldn’t be easy to get to for a CVS.

I popped to the loo and came back, more gel was applied and the scan resumed. A long silence passed, I tried to peak at Dr Thompson’s screen where all of the measurements were being complied. Not a word was said as he completed a detailed scan on our little Nugget.

I did wonder if this was good news or bad.... on the car journey over I had pondered the thought that all of the fluid would have gone and returned to normal, but the idea seemed like crazy talk. Well... until....

Finally Dr Thompson spoke and brought us up to speed on what he was seeing. He told me that our baby’s Nuchal fluid was completely normal, that he had Re-measured it and it was between 1.2/1.4mm which is in the complete realm of normal.

12 Week Ultrasound high NT fluid - Cystic Hygroma

No abnormal Nuchal Translucency reading, no Cystic Hygroma, no fetal hydrops, no abnormality.

1 healthy little baby growing away!

I sat stunned and listened, happy butterflies bubbling beneath the surface. He explained that when I was initially scanned at just gone 10 weeks, this was outside the suggested scan period. They say that from 11 weeks or a minimum crown rump length of 45mm that a Nuchal Translucency scan can/should be carried out.

If today had been my first scan, I would have gone in and everything would have been perfect. I would have left and there would have been no concerns over our little nugget. Not one. 

Dr Thompson explained that based on what he could see today, he was looking at a structurally sound baby for the gestation. 

In that very moment I had decided against even attempting the CVS. There was no way any needles were going near my baby when the only marker that had enticed the idea was not there, or potentially even a valid measurement. It was such a early anomaly that could have been down to something as simple as the lymphatic system being underdeveloped or many other reasons.

I can’t recall how I broached the subject but I know I let the good Dr know that I was now against the idea of a CVS and enquired into the possibility of the Harmony test instead.

With this he said that we should go and discuss all of our options in one of the little rooms adjacent to the scan room. We all sat down and got comfortable, I didn’t want to celebrate too early, but I was feeling like I was on cloud 9.

Dr Thompson talked us through the options, he said that he could attempt the CVS but that it would be a difficult procedure. I got the feeling that Luke was leaning towards this, but I had already written it out of the options I was considering. There was no way I was having a invasive procedure that would be even more difficult due to the fact of where my placenta was positioned. It was a firm no go for me.

Secondly we could opt for the Harmony test (NIPT - None Invasive Pregnancy Testing) which would involve taking a sample of my blood that has the baby’s DNA within it. This would test for the 3 Trisomies and give a high or low risk. 

This is what I was hoping we would be able to opt for.

This would then be backed up with a detailed echo that would take place between 16-18 weeks - This is where they will take a closer look at Nugget’s heart and make sure that everything was as it should be.

Finally... we could do nothing and they would discharge us.

We discussed all 3 of these options and the Dr left us alone to discus them amongst ourselves. Luke was confused about how I had now changed my mind about the CVS. He was of the opinion that we should be fully prepared and know everything... I was not willing to risk my baby and wanted to do the harmony test and then enjoy my pregnancy. 

Eventually we agreed on the Harmony test and the echo. We were left in the very capable hands of Vicky - the manager of the midwifery department. We discussed our decision but she couldn’t say if it was the right thing to do, but in my heart of hearts I already knew that it was.

They had decided to try and look at the scan image from the following week before we made our final decision. Vicky came back to the room with the consent form and I asked about the previous scan, she said that she couldn’t really use it as the image was ‘skewed’ and it wouldn’t have been the scan she had used in the file (our original scan was done by a trainee consultant) - so we didn’t really know if the fluid was the same level at the 11 week scan as opposed to either the 10 week or 12 week. At this point I was too happy to mind. 

I signed the consent form and we waited for the blood room to become free. We followed Vicky down the hall and I had my blood taken for the Harmony Test, it was painless and over as quickly as it had begun. We were told it could take up to 2 weeks for the results to come back.

After a tough 2 weeks of waiting for answers, I was now happy, the results would just concrete the relief I was now feeling. I finally felt like I could be excited about our baby and their arrival in August. 

Only a day before I felt like I was in limbo, I had reached 12 weeks but didn’t think I would be able to announce our pregnancy in the near future. All of a sudden I felt that I could say ‘hey, I’m having a baby this year!’. 

It’s amazing what can change in a day!

Vicky told us that she would call with the results when they come through, got our report and new scan images together for us, and off we went. Ready to tell our families the absolutely amazing news.

I have had such amazing care at the Fetal Medicine Unit, they have taken their time to answer my questions and provided detailed scans to help our baby. Now we are coming out the other side, and I am in awe of the work that they do. 

It’s time to start being excited about the new life growing inside of me, it’s time to start thinking pushchairs, baby clothes and start getting prepared.

A high NT brings clouds, but they don’t always rain.

If you are going through this nightmare journey right now, a happy ending is possible at the end of all this. 




Tuesday, 21 January 2020

The 11 Week Fetal Medicine Unit Appointment

Birmingham Women's Hospital Fetal Medicine Department

On Tuesday 21st January we made our way to the Women’s Hospital in Birmingham. We were meeting with the team at the Fetal Medicine Unit for the very first time. A place I didn’t even know existed until a week before at our dating scan, where a body of fluid of 4.7mm was found on our growing babies neck.

This appointment was for the purpose of a CVS, a invasive form of testing that would give us answers to any potential chromosome abnormalities that may be present in our unborn child.

It’s something I’ve been thinking about none stop, it’s taken over every waking moment of my day as I ponder possible outcomes for this pregnancy and our little baby. 

We arrived with about half an hour to spare, the Women’s Hospital is the biggest hospital I have ever been to, I thought finding where we were meant to be was going to be a mission in itself so insisted that before we sit down for drinks, we locate the Fetal Medicine Department. 

As it happens it was a lot easier to find than expected, thanks to helpful signage all along the corridors. The next prominent problem was that I didn’t need a wee, and being 11+2 the likelihood was that they would require me to have a full bladder to carry out the scan.

We settled in the hospital cafe, I nursed a hot chocolate and a bottle of water, all the while knowing that when that body of fluid hit my bladder I was going to know about it. Still on the run up to our appointment at 4pm, I still didn’t need to pee. Sitting in the waiting room at 4pm, I didn’t need to pee.

As my name was called, suddenly I needed to pee. In fact my bladder was now so full that I thought it might burst. A Dr named Leo walked us down the corridor to a room set up and ready to scan, he took my pregnancy notes and started to ask me questions. I explained what had happened at our previous scan and that we were here to hopefully get more answers.

I had prepared 16 of my own questions for this appointment, and some flew right off the tip of my tongue without even looking at the composition I had composed. 

Dr Leo explained that the fluid was on the babies neck under the skin, that it was not in the amniotic fluid collecting behind the babies neck. The gel was applied to my lower tummy and the Doppler pressed down firmly on my extremely full bladder (which was of course picked up on the screen), straight away a grainy image of our little nugget popped into view.

Disappointingly it was no where near as clear as the scan I had at our local hospital the week before. I wondered if it was due to my very full bladder. Dr Leo said the amount of fluid looked about the same, and over all apart from that our baby looked as expected for the gestation. 

Baby had done some growing in the 5 days since our dating scan, going from a CRL (crown rump length) of 39mm to 44.8mm. I took this as positive as baby flipped around in utereo unaware that we were all peeking in. 

It was nice to not hear the doom and gloom that I was expecting from this appointment, it was being judged firmly on it’s own merit. I found out that the placenta in this pregnancy is posterior, which was going to make a CVS tricky (especially in conjunction with my retroverted uterus).

I was told to go and empty my bladder to see if that altered the position of anything that would make it possible to perform the CVS safely. My gut feeling has come to pass, I knew ahead of time that the possibility of a CVS was slim. 

I returned feeling a lot lighter, and they had me sign the consent forms for the CVS procedure. A consultant named Tracey came in and re-scanned me, she was positive for the most part but did bring the word ‘termination’ to the table.

It wasn’t advice to act upon, it was looking ahead once we have firm results. She was giving me options. I asked if was I was allowed to fly as we have a trip to New York booked in February and I was advised that this would be fine. I should take low dose aspirin to keep my blood thin a week before the flight, and wear flight socks to keep the risk of clots to a minimum. 

Tracey’s examination was the confirmation that a CVS would not be taking place that day. I was booked in for another attempt on Monday 27th January, where I will be 12 weeks + 2 days. 

The positives of today’s appointment was that the heartbeat was good and there were no signs of Hydrops (Hydrops are swellings that occur within the baby, like in the stomach or limbs etc). 

I left with no more answers than I had came with, but I was reassured that baby was doing ok in there. I feel positive that all this may turn out ok, But I won’t know that until I have the tests that can give me answers.

I could feel tightenings in my lower tummy today, I’m certain that this is my tummy starting to stretch to accommodate our growing baby.

I don’t feel like I can tell anyone I’m pregnant, I can’t announce that I’m having a baby, I can’t even actually say I’m having a baby, because I might not. All this might end in tears, but it might all be ok. I hate all of this uncertainty, I just want to know that our babies going to be ok.

Unfortunately not even the doctors can tell me that, it’s all about taking one day at a time, one test at a time and hoping, hoping and hoping.

If on Monday I cannot have the CVS again, I have decided that I want to pay for the Harmony test, this is a none invasive test that takes my blood that has our babies DNA within it. They can test this and then give us a low or high risk for the 3 Trisomies. 

The Harmony test is not diagnostic like a CVS, but it might just give us some answers where currently there are none. I want some form of answers before we fly to New York, and if they can’t do the CVS the only other option is waiting until 16 weeks when they will perform an Amniocentesis (A needle into the amniotic sac). 

I can’t go 5/6 more weeks with no answers so the Harmony result would acts as a potential band aid in the mean time.

That brings me to the end of my latest update, I will be able to write again on Monday.....