Our TFMR Journey: Florence.

A personal account of pregnancy, TFMR, birth and life after loss. Zuzanna shares hers and her families experience of TFMR with their beautiful daughter Florence. A personal and devastating account that shows the strength and love a mother has for her daughter. I am so grateful to have Zuzanna in my life since meeting her within the baby loss community.

Before Florence

My husband and I were ecstatic when we found out we were pregnant. We longed for a baby of our

own and having heard so many different experiences of falling pregnant from friends and family, we

had no expectations of falling pregnant so quickly. But we did. It felt like it was meant to be.

However, our pregnancy was stressful from the day we had the positive test.

I started bleeding. I didn’t know what it could’ve meant, so I googled how implantation bleeding should look like and quickly realised that my bleeding was more severe than what Google described. It was Sunday night and I was so nervous. I made a call to the GP first thing on Monday. I spoke to one of the doctors who said “it is likely you are miscarrying”. But because I was only around 3.5 weeks pregnant, no one wanted to see me. I was advised to call back if I am still bleeding at 6 weeks. I was devastated. I couldn’t understand why no one wanted to see me. Why would a doctor tell me over the phone that I was likely miscarrying?

6 weeks came and I was full of stress. I wasn’t bleeding but I sort of accepted we lost the baby. We

booked a private scan to confirm this. In the meantime, I received a phone call from the community midwives to book my booking appointment. I explained what happened and they advised they would call me after my scan to see what the outcome is. At the scan, the sonographer was asking if I definitely had my dates right. I knew I did.

She was very quiet, but as this was my first pregnancy, I didn’t know what to expect. After scanning,

we felt there was something more to it. The sonographer explained that she can see something that

possibly looks like a yolk sac, but there was no heartbeat, indicating that either I was miscarrying or I

had got my dates wrong. She explained it was pregnancy of uncertain viability. At this point, we were even more distraught. We felt like everything was piling up. The same day the community midwives called back. After listening to what had happened at the scan, they advised me to call the Early Pregnancy Assessment Unit and tell them everything I have experienced to date.

So I did. The EPU was a bit confused why I was calling and why no healthcare professional referred

me to them, but despite the lack of a referral, they agreed to see me.

Another stressful appointment. Another two-week wait. More tears. More hibernating in bed with

chocolate feeling hopeless.

At the EPU appointment, the doctor was able to locate the heartbeat straight away - the baby was

okay! I cried with relief, I couldn’t believe it. However, they couldn't find out the reason for the bleeding.

But at this point I really didn’t care.

Despite of knowing everything was okay, I was nervous each time going to the bathroom, expecting

bleeding. And I did have another one. three days before my 12-week scan. This time I have spoken to

an incredible GP who has called the EPU without the delay, and within 30 minutes I had another

appointment booked for the next day.

Another EPU trip, same doctor. Again, everything seemed to be normal, Florence (although, we didn’t know she was a girl at the time) was wriggling so much they couldn’t even measure her!

12-week appointment was all okay. No explanation for the two bleeding episodes.

I was nervous between the 12- and 20-week scans but I tried to remain as calm as possible. I didn’t

feel the movements for a long time (I did have an anterior placenta). I felt some flutters at 18-19 weeks but nothing regular so I wasn’t sure if it was the baby movements or just a blood flow in veins.

At 20 weeks, I walked in very confident, I said I know it’s a girl, but I just need confirmation. And indeed it was a girl. Our beloved Florence. We had the name picked out since 9 weeks pregnant, my husband was referring to bump as Flossie so having the confirmation it was our little Florence was a dream come true.

Florence wasn’t very active at the scan and we were asked to go for a walk. Sadly, the walk did not

help.

The sonographer explained the findings:

Everything looks okay

She couldn’t scan lower half of her body as Florence was wedged into my pelvis

Florence was measuring at 3rd percentile

Given how little she was, we got referred to the Fetal Medicine Unit. I didn’t think anything of it as both

my husband and I were quite small babies, but I understood this was a standard process and I was

okay with the referral. The sonographer also explained that they would repeat the anatomy scan as

they have the doppler scanner which will enable them complete the lower part of her body.

Little did I know that this referral was anything but a “standard process” and I do believe the

sonographer knew more than she was giving away. The next day I received the call from the specialist midwife who said that the soonest appointment was in a week’s time. I thought this was incredibly quick and I was impressed. But that’s when her tone changed and said I needed to be seen the next day and they would call another hospital trust to see if they can have me. And they could.

Another appointment. Friday 13th.

I told my husband not to worry about taking time off from work. It’s “only” a follow-up scan.

God it wasn’t.

I was being scanned for nearly an hour and a half. They couldn’t scan Florence’s legs properly (they

did manage in the end but it was a huge team effort - 4 healthcare professionals in the room with me).

After the scan, I was asked to sit in the office and wait for them to come back to me. I was getting a bit

nervous but I was still oblivious at this point.

Here came the findings:

• Florence had a talipes in her right foot

• Her right lower limb was shorter

• They said it carried a risk of chromosomal differences, although they didn’t believe there were any

• They couldn’t see her heart properly, so they were referring to the paediatric cardiologist

• They gave me an option of amniocentesis.

I spent six hours in the hospital. All by myself. I had to drive half an hour home. It was a blur. I was

screaming and crying. I didn’t understand anything. As it was Friday night, we had to wait until Monday to speak to hospital again. I spent the entire weekend googling everything, I found out that talipes can be linked to Edwards syndrome. I thought the worst. I couldn’t sleep. It was awful.

We opted to have the amniocentesis, so we quickly returned to the hospital. The procedure was done without any anaesthetic. Extremely uncomfortable procedure.

And then came another two-week wait.

Another appointment, another scan.

The diagnosis became clearer

• The amniocentesis results came back clear

• The cardiologist had cleared her heart findings

• But Florence’s tummy hadn’t grown since the last appointment

• And the amniotic fluid had reduced

Her foot was not only a “usual” clubfoot; It was completely inverted

• Her shorter limb was half the length

• She’d have to have her leg amputated - and this was “the best” possible outcome

Another waiting game.

Decisions.

Discussions.

Follow-ups with our doctor.

Facing the impossible decision. They explained:

• She was at risk of stillbirth

• If she survived, she would have been delivered by 28 weeks due to her size and everything going on

• If she survived, she was at risk of brain damage and severe cognitive disability

But then they said “but she might be ok’.

But we didn’t know it, did we?

I work in special needs sector. We had to weigh everything out. What were our options if she was

okay, what were the options if she wasn’t okay.

At this point, we understood that post 24 weeks TFMR would only be agreed by two medical opinions around the “handicap” regulations.

I was 23 weeks pregnant. the Easter bank holiday was approaching.

We had one day to make a decision.

I selfishly was praying Florence would take the decision out of our hands. I didn’t want to make the

decision. I didn’t want to lose Florence.

So we spoke to ARC, who advised a few important questions we should ask our hospital. One of them being “if nothing changes in the next week, what would be your professional advice”. The doctor said she can have a hypothetical conversations with her team.

She did. She came back to me very quickly.

“If nothing changes, we would agree to TFMR”.

And just like that we knew that things were bad. We knew nothing would change in a week’s time. My

mental health was deteriorating. I was having a mental breakdown. We made the worst “best” decision to protect our baby girl from pain.

The TFMR procedure was devastating. They said it was similar to an amniocentesis. It was not.

Florence went from a baby who barely ever moved, to wriggling away making it even more difficult for us.

I was lying down with closed eyes crying, blood was streaming down my side and back. It was all so

unimaginable. Then we had to wait another 15 minutes to repeat the scan to to confirm whether the

TFMR was completed.

They prepared me for the next steps and booked me with our local hospital to deliver in the

bereavement suite in two days’ time.

And that was it.

I went home to wait 2 days to give birth to our beautiful girl.

We went into the hospital on Saturday morning. I was so overwhelmed. The bereavement suite looked like an airbnb. I hated every single corner of the room.

The midwives were incredible, the whole process was explained in details. They asked about Florence and referred to her by name which made it all ever more real.

Three rounds of tablets.

The worst pain in my life. Strong contractions from 3pm. At 6pm they became unbearable.

Paracetamol, cocodamol, morphine in syrup, laughing gas. Nothing was helping.

1am on Sunday. I got to the stage of needing a morphine drip.

And that’s when it all started.

The needle was going into my vein.

I started violently throwing up.

My waters broke.

All at the same time.

Florence started coming. She was here within a few minutes of my waters breaking.

I was so tired and heavily medicated, I couldn’t see her properly at the time. This is something I now

regret. I regret agreeing to the morphine and not seeing my baby girl.

My placenta took some time to come out. It was all on fragments so an an obstetrician had to check it, but he confirmed it was okay and looked like all placenta came out.

I barely slept. I woke up being violently sick again. after a few hours of trying to sort myself out,

Meeting our daughter

Oh, she looked like a little dolly. She was so tiny and fragile. I was so scared to pick her up. She

looked so peaceful in a Moses basket. She was my little copy.

We spent the day with our gorgeous Florence. She was blessed by a chaplain and all our midwives

and doctors came to meet her. The midwives created all the keepsakes for us so we can take

everything home.

We had a whole day full of paperwork, as we opted into a post-mortem.

And then at the end of the day, I had to go home. It was all too much for me. They said Florence will be

there for 3 days before going for post mortem and I could come and see her at any point, but I didn’t.

That’s another thing I regret.

2 days later, I started passing placenta at home, as we then found out that I had retained placenta and not everything has come out. I had a visit from the community midwives, they checked me up, said all was ok. The same day I had phone call from the funeral home. It was all too overwhelming.

That same week, we met our bereavement midwife and we got referred to counselling funded by our hospital trust.

Saying goodbye

But saying goodbye to our little girl was the most heartbreaking moment of my life.

We had her funeral and continued with counselling.

I also met the criteria for counselling from Petals.

I had regular calls and visits from the bereavement midwife and my OB.

We got left with nothing but counselling and awaiting the post-mortem results which were expected at any point up to six months later, but to our surprise we received them 6 weeks later.

We had our confirmation:

• A dysfunctional placenta

• Fetal Growth Restriction

• A couple of other findings all linking to placental dysfunction

• The bones in her legs did not develop properly

The doctor did confirm it was unlikely she would have made it.

It’s been nearly 6 months since we lost Florence. 6 months of healing, processing, finding the new us, and advocating.

I am trying my best to parent my daughter even though she isn’t here.

I will never stop raising awareness of TFMR.

I will never stop talking about Florence.