When I turned up for my 30 week scan at the hospital I was completely unprepared for what was about to happen. We were told our unborn son had Hydrops and SVT. These are two health conditions I had never heard of before and my lack of knowledge scared me.

We had arrived early for the scan but had struggled to find parking. I went into the room with the sonographer on my own and she started the scan. She started the scan and asked me to check if my husband was on his way. I checked and he wasn’t. The sonographer instructed me to tell my husband that she was giving permission to park in the 10 minute bay. She was going to go and let security know that she had authorised my husband to park there.

Something wasn’t right

My husband arrived in the room a few minutes later and as soon as he was sat in the chair she informed us something was wrong with our little baby boy. She had started the scan again and pointed out that there was a large amount of fluid on his tummy that shouldn’t be there. This was called Hydrops fetalis, and that his heart rate was too high, this was called SVT. She had already sent the scan to doctors to be reviewed. She left us for a few minutes to find out what they thought the best course of action was.

We went to a waiting room and my husband gave me a hug. I was scared and not sure what was going to happen next. The sonographer came back and said the decision was for me to go up for an emergency c-section right now. The floodgates opened and I couldn’t stop myself from crying. I had to walk back through the waiting room with all the pregnant mothers. I turned my head as I didn’t want them to see me so upset.

Pregnant woman holding her bump. Photography credit: Michalina
Pregnant woman holding her bump. Photography credit: Michalina

Once we were in the lift my husband took me into a big bear hug, it was exactly what I needed. I later found out that the sonographer was crying. My husband was trying to comfort me but also protect me from seeing her so upset. Once out of the lift I was greeted by a nurse and rushed off to a room. I don’t know how but I managed to pull myself together once I was in the private room. The tears stopped and it was time to get ready for surgery.

We were off to theatre for an emergency c-section

I answered a lot of questions, got changed and was repeatedly prodded and poked. Very soon it was time to go to theatre. I went in on my own initially while my husband was went to get some theatre scrubs on. The theatre team member with him explained that our son was really poorly and they didn’t think he was going to survive delivery.

Premature baby with Hydrops fetalis
My little boy with Hydrops fetalis

Our son was born and the room was silent. There was no baby cry. The theatre team weren’t talking to each other. They are so aware of their roles and what needs doing that they don’t need to communicate. The only noise was me and my husband talking any distracting topic that popped into our heads. My husband did peep around he divide going across my middle but couldn’t see anything.

A few minutes went by and an incubator was wheeled into sight and parked next to me for a minute. I looked in to see my beautiful baby boy. The love I felt for him really intensified in that moment. I didn’t quite realise at the time but he had so much fluid all over his body he looked like a plump newborn baby. I would soon learn what Hydrops was and the difference it made when some of the fluid drained.

My little boy in his incubator. The Hydrops fluid starting to drain from his arms and legs.
My little boy in his incubator.

Learning about Hydrops

It took hours for the neonatal team to stabalise my little boy. Eventually two support staff were able to sneak me up to the NICU so I could spend 20 minutes looking at my son. At that point I was starting to realise the fight he had ahead of him.

As the days went on we learnt more about Hydrops. The fluid on my son’s body drained from his arms and legs making them so skinny. The fluid on his tummy was stubborn though and was not for shifting. We were told early on to ask any questions we had about our son’s health conditions and was advised not to Google too much.

Premature baby in containment hold
My premature son in containment hold

For the first 6 weeks we didn’t Google Hydrops, and I am so glad I didn’t as it makes very grim reading. The doctors were great in answering our questions and we took it one day at a time. By week 6 our little boy was doing so much better and seemed to be increasingly out of the danger zone. He never lost the fluid on his tummy during his 10 week neonatal stay and the doctors discussed several times whether to tap the fluid. This is a procedure where they insert a needle and drain the fluid. This regularly went to a vote and always resulted 3 against tapping and 2 for. As the months went by the fluid drained itself.

We now have a happy little boy

This journey was not an easy one and Hydrops is not something I would wish upon anybody. However my little boy is now a thriving 2 year old who is full of life. The statistics were hugely stacked against him (this is the grim part – only 20% of babies with Hydrops survive delivery and only 10% of those survive after birth). There are survivors out there though and with medical advances hopefully these statistics will keep improving.

Me and my little boy. Photography credit: Vivienne Guy
Me and my little boy. Photography credit: Vivienne Guy