Neonatal life was difficult, I was on the maternity ward for a few days then just stayed by her bedside until we could be given a room to stay in at the hospital.

Serenity was on a CPAP machine for about a week and then eventually came on the machine below. I can’t remember what it was called but its the machine below a CPAP machine, then its just oxygen. She was on this for a while, the nurses kept trying to take her off to quickly and it always set her back a few days. We got to know these machines quite well, my partner even told the nurses when to fill the water up to stop the tubes getting hot for her as this was often missed. We also got to know the alarms and what all the numbers and lines meant on the monitor. Serenity still hadn’t opened her eyes, I still hadn’t held her and barely touched her. I couldn’t stop worrying that I wouldn’t bond with my baby girl. I hadn’t seen her move, I hadn’t seen her make a noise or cry or anything, she was also very under weight.

She was NG tube fed, which is a tube that runs into the nose straight into the stomach, and we learned how to feed her this way. At this point she was having my breast milk through the tube.

Serenity would have regular blood tests, and she wouldn’t wake up or cry. Every other baby would scream at the blood tests and I just couldn’t understand why my little girl wouldn’t react.

Because of this, Serenity started to see quite a few doctors, they informed us that something isn’t right with her so this needs to be investigated. She had many tests on her lungs, but she still wasn’t breathing right so they needed to find out why. First she had a brain scan to see if any lack of oxygen in the womb occurred and has caused brain damage. We were distraught at this as I was at the hospital more than 3 times a week with lack of movements and a low heart rate, which I believe are the biggest signs of starvation of oxygen in the womb. The results of this was her brain overall and the cells seemed fine, however her brain looked very immature. I didn’t worry about this as I thought it was due to her having a few weeks of no growth. She was born at 37 weeks but should they have been measuring her against a 35 week old?

After Serenity was off the CPAP machine we could finally hold her. I held her and the feeling was surreal, my little girl finally after all this time was in my arms. She still wasn’t awake but I knew from this moment she would be okay. However, I knew babies were soft but it felt like my baby girl had no muscles or even bones, she was so fragile.

Genetic Testing

The next step after brain scans was Genetic Testing, they said they needed to carry out these tests due to the following:

• Very low birth weight due to her age
• Extremely low muscle tone
• High Pallet
• She couldn’t breathe very well on her own
• Poor respiratory effort at birth
• Unresponsiveness

In addition to this they were saying her ears don’t look right and criticizing her head shape. She has the same head shape as me! This was upsetting as they kept criticising my lovely daughters appearance but no one else’s baby.

Serenity had to have a lot of blood tests and my partner and myself also had to have bloods taken too. This is where they pick apart all of our DNA and see if there are any abnormalities. By this point, she still hadn’t moved.

The Diagnosis

About 2 weeks later we were taken into a Private Room and was told Serenity has Prader-Willi Syndrome. It was explained it was nothing that I had done or didn’t do during pregnancy, nothing hereditary its just one of those nature things that happen to a select few of us. I had heard of Prader-Willi Syndrome before but didn’t really know what it was. It was one of the conditions I Googled while I was waiting for the results. I kept trying to find out the condition myself based of her symptoms and birth but there was thousands! Prader-Willi Syndrome kept always popping up in my head.

I was so stunned. I’ve always been around ‘healthy’ pregnancies so never thought these kind of rare things would happen to me. I didn’t particularly feel upset. This was my first child it was all so new to me anyway. I did start to worry about the future, thoughts like ‘what if she needs 24/7 care’ came up for me quite a lot. I am a very work orientated person, I love my job and I love what I do and I have my own goals around this so I worried if I would have give it all up to be a carer for the rest of my life. Then I felt guilty for thinking like this, and I learned we cannot look that far into the future and worry because it is so unknown. I cannot predict what life will be like anyway even without the diagnosis, I cannot predict the way Medical Science will go and what is out there to help her. These thoughts left as quickly as they came, because the only thing I needed to worry about was my little girl in the here and now.

I felt quite relieved that we actually had answers to why we went through everything and it finally all made sense.

They explained briefly what Prader-Willi Syndrome was and was told we would have many referrals done to other consultants to help us when we got home. As we received the diagnosis, and Serenity’s breathing improved, we could get ready to go home.

Serenity’s breathing was a lot better, however she still needed support and it was agreed she would go home on oxygen, the hospital arranged a company, Baywater to deliver our oxygen and tubes. I also had to sort out a prescription for Serenity’s high calorie milk. She was on breast milk but she needed the calories for energy and to catch up on her weight. The milk she had was pre-made bottles of Infantrini. I was apprehensive about dealing with all the consultants and prescriptions because it was so difficult to set up this prescription, the GP was so un-co-operative. Once all these things had been sorted and referrals had been made, we could go home, we had a lot of input from the hospital about first aid, how she will sleep, positioning and feeding as we also needed to get signed of to NG Tube feed her at home. We were set up with Nutrica Homewood to send us all we needed for the tube feeding.

We was discharged from hospital August 2021.