Tuesday, 24 March 2020

20 Weeks Pregnant - The Final Fetal Medicine Appointment

20 weeks pregnant - Tetrology of Fallot

On Sunday I reached 20 weeks pregnant, this was my ultimate milestone after the high Nuchal Translucancy test 10 whole weeks ago. A period of time I didn’t know if I would ever make after being told I was at higher risk of miscarriage following the high Nuchal fold. 

The time has passed so very slowly,  it feels like a lifetime ago since we first received the news that there may be something wrong with our baby. It has been a weight around my neck that has only grown tighter with the passage of time. 

Somehow we have weathered each and every appointment, each one bringing a fresh blow to the heart. 

Today with the world in a Covid 19 lockdown, we made our way back to Birmingham Women’s Hospital to see the team at fetal medicine. 

Today we were having a detailed echocardiogram to look at baby boys heart. Weirdly since I found out about the low amniotic fluid (Oligohydromnios), I’ve put the heart to the bottom of my list of worries.

Today it felt different to all of those other visits, it felt like today we might actually have some light shone on what was going on within my tiny little baby. 

Leo and I were dropped outside the front of the hospital as I was bursting for a pee (and had been since 5 minutes into the journey for that matter). I stood with Leo in the midst of a ghost town of the former busy hospital I had known before all of this. 

People walked around in masks, the cafe was open but baracaded off to only let 2 people in at a time so that they could practice safe social distancing. It was like being stood in the middle of a sci-fi movie. 

We made our way straight to Fetal Medicine so we didn’t have to hang around anywhere else too long, we were about 40 minutes early and we walked in to an almost empty waiting area with no receptionist to speak to.

We sat there for 5 minutes before the reception lady appeared, as soon as she saw Leo she started asking whether we had ‘received the message about children’, I think my blank expression answered that one, of course I hadn’t because nothing had been sent to me. It transpired that children were currently not allowed anywhere in the hospital. 

This meant that Leo had to leave the hospital, which left me alone to face the music, the two people I had come with had to leave, so I had to go into the unknown alone. I prayed the receptionist didn’t talk to me again as I sat there, I was angry and anxious and knew that I would just cry agitated tears at her.

My name was called and I was lead to the same room that my previous echocardiogram scan had been conducted in. The consultant asked if I had anyone with me... I had done, but now no I did not. 

The scan was carried out in silence, I think this may have been the longest ultrasound I have ever been in. The entire time he was looking at baby boy’s heart, I could see the red and blue flowing around, the oxygenated blood and the oxygen poor blood. To me it looked fine, it looked like it was flowing. I glanced at the man scanning me, but he gave nothing away.

When he did direct away from the heart, I saw baby boy and the small amount of amniotic fluid that was still left. He asked me whether I had lost any fluid, to which I honestly answered no. 

He pushed so hard with the Doppler, I had been having shooty pains low down on my left side on and off all day, and when he pushed down as firmly as he did, my tummy felt crampy. Eventually he said that to save tormenting me he would sit me in the adjacent room, I assumed this was when he would draw up my notes and then come back in to talk to me about what he had seen....

I sat there for over 20 minutes, people were walking past but no one materialised for me. Eventually a new face poked around the door, she told me that I was having another scan. I lay back down on the table and she began to do her own investigation. 

This second face was actually the fetal cardiologist consultant, she knew her stuff. This scan didn’t last as long as the inital one, the original consultant had re-entered the room now and they were passing comments back and forth, although it might as well have been in a foreign language. 

Finally Dr Johnston came into the room, I saw her at what I believe was my second fetal medicine appointment. Now they had finished looking at the heart, they needed to look baby over head to toe in order to give me a diagnosis and potential prognosis.

I had been in the hospital well over an hour now, well aware that it must have been so tedious for my boys waiting for me to finish. 

The final scan concluded and I was shown back to the room I had been occupying. I was told that they were going to draw the report up now and then they would come and discuss everything with me.

Eventually Dr Johnston, the cardiologist and another face entered the room. The third person had materialised when they had shouted ‘were ready for you now’, I wasn’t sure what her role in all this would be right away, but it soon became transparent.

What they were about to tell me, they had been worrying about telling me, mainly because I was alone. This third face was here to be my shoulder to cry on should I need it.

Dr Johnston started by asking me what I understood so far. ‘I’m aware that there were a number of structural differences found in the baby, including the heart and low amniotic fluid. I am not expecting you to have good news for me’.

I think this cast some relief over them, judging by their sorrowful looks. I wasn’t sure who to look at, so I just tried to focus on whoever was speaking.

Dr Johnston continued ‘the baby is significantly smaller than he should be at this stage and there is very little fluid around the baby. Starting from the top, babies head is long and narrow which is nothing to worry about, it’s just a symptom of their being less fluid. The brain itself looks ok, I know there were concerns about the cerebellum but that actually looks alright. It’s small in keeping with the rest of the baby’.

I can’t see the face clearly, I can see there’s Two eyes, I can see there’s a nose. I can’t see the lip as clearly as I would like to so I can’t really comment on that. The spine looks ok, the arms have the right number of bones and that’s important because there are other syndromes that can be associated with one of the bones missing in the forearm. All the long bones are present.

I can see fingers, I can’t see feet clearly, but that’s not that they aren’t there, it’s just due to the lack of fluid. I can see the belly button and there are 2 vessels in the cord instead of 3, on its own that doesn’t really mean anything but can go with kidney problems.

Putting everything together the main thing that I am worried about here is that when there is no fluid around the baby at this stage, the lungs don’t develop. I think the risk of what we call lethal pulmonary (lungs) hypoplasia (small) where the lungs have grown too small, or the lungs aren’t big enough, the baby can’t get the oxygen out of the air that he breathes, there are no ventilators or drugs that will change that. If the lungs are really small then we call that lethal because they just don’t survive after birth.... and I think your baby falls in that category.

I’m very worried that it doesn’t matter what we do or how far you get in the pregnancy, that after birth the baby isn’t going to survive because of the chest. I think that is a real concern.

Now...we are seeing differences in the heart as well’ 

This is where the cardiologist starts talking to me.

‘I have labelled the heart as something called Tetrology of Fallot which is when there is a hole in the heart’ 

I asked for confirmation that there was a hole and she said ‘yes there is a big hole’. ‘The blood vessels are shifted over so they come more from the right side of the heart. Usually you have Two blood vessels come off, the body blood vessel and one that goes to our lungs. The one that goes to the lungs in narrow, it’s not completely closed but it’s really narrowed and the lung arteries are really small, it’s what we call congenital heart disease. 

If it was that on its own, there are things that we can do. It involves heart surgery but when it’s everything else as well, the problem is babies need really, really good lungs for their heart surgery to go really well. When you add in lungs that are not good, a heart that’s not good and then problems with kidneys as well... it doesn’t go very well. 

I was taking the news very well until they asked me if I had thought about what I wanted to do, it’s all I have really been thinking about. How do you decide to terminate a baby that you whole heartedly want to bring into the world? A baby that was supposed to be your rainbow baby?A baby that was supposed to make Leo a big brother? A baby that you want to bring home and show the big wide world to?

I declined a termination, I said no to stopping my baby boys heartbeat without so much of a second thought. 

I was told a termination at this stage most probably won’t change the outlook for our little man, that he may continue to survive inside because my body is doing all of the work for him, even with the low amniotic fluid. 

The conversation quickly progressed from hearts, kidneys and no baby to bring home, to how I wanted to proceed with labour and birth. I’ve said all along that whatever happens I want to labour. This is the very least I can do for my baby, and whenever this happens, I will rise to the occasion and do what needs to be done.  

I was told to decline fetal monitoring as it is more than likely that the baby is going to get distressed, as the cord will get squashed due to the lack of fluid which could then lead to an emergency c-section. A C section would be a big surgery to go through and would impact any future pregnancies... and on top of recovering from surgery to then not bring my baby boy home.

Then it progressed onto ‘after the baby is born’ this is where I was told to only consider a care package, and this is where I have to disagree. 

If I can get my baby to a viable gestation, no one can really say how his lungs are going to be, or how he really will be over all. 

Scans are wonderful things that allow an insight into a baby’s growth and development while in utero.... but they can get things wrong, they don’t always pick everything up (especially with low fluid). I had been told by more than one consultant in this pregnancy that babies cerebellum was abnormal, and now it’s not. Now I’m told that it’s normal. 

I was told that my baby most likely had Edwards Syndrome, that he had scoliosis of the lower spine, and then he passed the Amniocentisis and his spine looks fine. 

This is exactly why I’ve made my decision. 

I cannot and will not end my babies life. 

I will take each day as it comes, I have to choose between Two horrendous choices. I can choose to end my babies life now, or I can carry on and birth him, and lose him anyway.

Either way I have to labour. 

Or.. I can carry on letting nature decide. I can ask for intervention if we get to a viable stage. I can ask for steroids for the babies lungs, I can ask for saline solution during labour to help stop baby becoming distressed, and I can opt for intervention after he is born. 

I haven’t grown him for 20 weeks to give up on him now. He hasn’t overcome the Amniocentisis and having low amniotic fluid for me to give up on him now.

So out of my Two horrible decisions, I choose to carry on. I choose blind faith, I choose life. I choose to let him fight and have a chance, because a chance instead of certain demise is what will get me through this.

Either way I have to labour, either way I will meet this little man, but one means I will meet him after his eyes have closed forever, after I have stopped his heart from beating and one means that I might get some time with him, no matter how small that time may be. 

Tonight as I lay in bed, I felt baby boy move for the first time. I didn’t think that moment would ever come in this pregnancy, but he wiggled hard enough for me to not only feel him within, but to feel him with my hand on my stomach. 

I like to believe that this is his way of telling me to keep going, out of all the days I could have felt the little push of his movements, he chose today (20+2 weeks). Today he was strong enough for me to feel him him, the same day I was offered a termination to end his life. 

Only time will tell how this story plays out, and only entering the world will give us a real look at my little heart warrior. 





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