The ups and downs of NICU - Lauren's story

Lauren's Story Hero

I found out I was pregnant at seven weeks with our first baby - we were over the moon with the news. At week ten I had a bleed, then again at 12 weeks. We thought the worst.

I had a scan and the sonographer picked up a good strong heartbeat, but told me I had a subchorionic hematoma (an accumulation of blood between the membranes of the placenta and the uterus) and that the remaining blood would absorb itself or come away. Two days later I had another bleed, bigger than before. We were told that I was having a threatened miscarriage. We were devastated, but a scan the next day showed all was ok.

Finally the bleeding stopped and we felt so happy that we were moving on and hopefully would be able to start enjoying the pregnancy. However, one Monday morning as I got out of bed I felt a small gush, but didn't think much of it until it happened again, this time much more. I called my GP who said it sounded like my waters had broken. I couldn't believe it, as I didn't even know that could happen.

Following my GP’s advice I went to the early pregnancy unit for a scan and they told me I still had fluid and that I had just wet myself! I felt so embarrassed, but they told me not to worry and sent me home. However, when I drove home and got out of the car it happened again. I went back to the hospital and this time they told me it was my waters that had broken and that I would more than likely go into labour in the next 48 hours. Again, we were devastated.

Nothing happened in the next 48 hours, so we were booked in to see a specialist for the following week. We went home saddened and didn't really know what to think. We saw the specialist, who told us that our precious baby had no fluid at all and appeared very stuck and twisted - not what we wanted to hear.

She offered us a termination and warned us that if we did go through with the pregnancy our baby would without doubt have some sort of disability and probably wouldn't make it, as the lungs would be so underdeveloped. She gave us that night to make a decision.

We went home in shock and researched PPROM (Preterm premature rupture of membranes) to see if there were any success stories. We read lots of people's experiences - some were positive and some I couldn't read. We decided to keep going and let nature take its course. Our precious baby made it to 28 weeks and six days. I started having contractions and ended up having an emergency caesarean section. I had to have a general anaesthetic for the birth, so I didn't even get to see our baby until four hours afterwards.

When I came round my partner told me we had a little girl. She had to be ventilated, but was doing brilliantly. I was wheeled into intensive care to meet our beautiful baby, and it was then that I was told that she was actually a he, and he wasn't doing so great. Within the space of an hour the consultants came to see me and told me they needed to transfer him to a level three intensive care unit as soon as possible. They didn't think he would make the journey.

I had the awful task of calling my partner to tell him that he had to go with our baby. The transport went well and he made it to the other hospital.

When I was transferred to the same hospital my partner and I were told that our precious baby wouldn't make it, due to his lungs being so underdeveloped, among other things. They also couldn't actually tell us whether our baby was a girl or a boy and would have to do lots of testing to determine the sex. We were devastated and it was really difficult to take it all in. The next few days were a complete blur. I spent around 20 hours a day by the side of my baby's incubator looking in and crying my eyes out. This wasn't what I'd planned for our child and I blamed myself.

Our baby didn't try milk until he was four and a half weeks old, due to his organs not working properly. On day ten he had a massive bleed on the lungs due to his platelet levels being so low. He had a total of five platelet transfusions, six blood transfusions and two blood exchanges.

On day 12 we were told that they had found a bleed on the brain and informed that this was very common in premature babies, so we weren't too worried. However, on day 14 the consultant took us aside and told us that the bleed was causing serious problems and it was likely that he would grow up to be severely disabled. She told us that the team of consultants had discussed the case and thought it would be best to stop all intensive care, as our baby wouldn't have a good quality of life.

We were completely distraught. What do you do in that situation? We didn't know if we should let our beautiful baby go, or keep going.

Three days later the consultant came back to us and said that our baby had started to breathe for himself and they were thinking of moving him on to CPAP (gentle breathing support). So four and a half weeks after he was born, we got to hold our baby for the first time. He made fantastic progress in the next few days - which amazed all the doctors.

In the meantime, the endocrine team came to confirm the sex of our baby – a boy! They also told us that he would need a small operation when he was one, to correct him.

After five and a half weeks in NICU we were told that we were being transferred back to our local hospital, as he was doing so well. We were shocked but very happy. He was diagnosed with hydrocephalus (fluid on the brain) but an MRI has shown that his brain has recovered well and all we should expect are some slight learning and behavioural difficulties. He had a shunt (a tube to redirect the fluid) fitted a couple of weeks ago.

After coming home Jesse had to be hospitalised for pulmonary hypertension. We were told that he may not make it as his heart may not be able to make it, but he pulled through. He's home now on oxygen but he's doing great. He really is our little miracle!

I wanted to share my story, as when we were going through such an awful time we had no one to talk to or relate to in any way. If I can help just one person, that would make me very happy.