Maia’s Story

After several years of struggling to get pregnant in late January 2004 I found I was pregnant, we were over the moon, trying to keep it a secret was almost impossible; we were desperate to tell everyone! It was going to be the hardest secret to keep until we got to the twelve week scan and to ensure that all was well with the baby. The scan date soon arrived and we finally saw our baby it can only be described as unbelievable, the most amazing thing in the world.

About 2 weeks later I had my first midwives appointment at my local Doctor’s surgery, going through my medical history the midwife spotted something that slightly concerned her and she wanted to refer me to the hospital for closer monitoring. At this point I will spare you the in depth medical details. Appointments and further examinations at the hospital came up with the same result, that there was a very high chance that my body may not be able to cope with a pregnancy to full term and that I could have a very late miscarriage. The only way to go forward was to take each day one by one, there was no way of knowing, it was wait and see. We were completely devastated! By now I was about 16 weeks pregnant and time was ticking on and it was going to be a long and worrying wait to get through the pregnancy.

At 17 weeks I suddenly started haemorrhaging and was admitted to the anti natal section of the maternity unit, things were not looking good, I was told that it looked like I was going to have a miscarriage and to prepare for the worst. 3 days later everything had settled down and I was sent home, still pregnant, what a relief. But four days later the same problem again and I was back in hospital waiting to have a miscarriage. Being on the anti natal ward was grim, the majority of the women around me were waiting to give birth and in the early stages of labour as this progressed they were then moved to delivery. If they weren’t already in labour then they were in for routine tests, it was heart breaking as my situation was getting worse and worse! Suddenly after 2 days the bleeding stopped and I was allowed home again, what a relief I was still pregnant. I returned to work and managed 2 weeks at work, I felt great, looked well and thought we were past the worse.

19 weeks, I was on my way home from work one evening and really did not feel great, I was having chronic cramps in my stomach and was very worried that I was not going to make the train journey home. By late evening the pain had passed and everything had settled down when suddenly I started haemorrhaging very badly, I was back in hospital with in 15 minutes and stayed there until our daughter finally arrived at 28 weeks.

The weeks in hospital were a complete roller coaster, was I going to have a miscarriage or not. By the time I got to 20/21 weeks every day became a nightmare as my situation got worse and worse, Doctors would visit and tell me that things weren’t looking good, if the baby arrived today there was a high percentage chance that she could have some disabilities from being premature, she may not be able to breath on her own, etc what did we want to do, did we want them to fight for her no matter what.

I was bleeding so badly that I was not allowed out of the hospital, if I was having a ‘good’ day then I got as far as a walk around the car park but that was it. I was climbing the walls with worry over the baby, worrying about work and hating every minute of being confined to hospital. I must have been the patient from hell!

Our daughter finally arrived by emergency caesarean following a horrendous weekend of bleeding on the last day of my 28 th week; she weighed in at 1.32 kilos ( 2 lb 15 oz). Thankfully when she was born she managed to breath on her own, this was the best news ever, and it gave her a better chance of survival. I saw her for what felt like a second as she was whisked away to the neonatal unit, it was just the tiniest face in a bundle of towels and blankets. My husband stayed with me until I was sent to recovery. After a couple of hours one of the Doctors from the neonatal unit came to find us, ‘would my husband like to come and see the baby? ’ Of course he would and so would I but there was no way I was fit enough to go anywhere! He arrived back about an hour later, the baby was doing okay, she was still trying to breath on her own and as a result of this she didn’t need to be intubated, she was being helped to breath by CPAP. Great news, she was being checked over and monitored but the next couple of days were going to be critical. My husband had a polaroid picture that one of the nurses on the unit had taken, our daughter! It was completely over whelming; this tiny scrap in an incubator, covered in wires, attached to monitors with this strange breathing apparatus over her head was ours. She looked dreadful, so tiny, so ill and yet wonderful in the one go.

It was very strange as we were just so excited and happy, yet we still had so many milestones to get over!

Unfortunately I was not that well after the birth of my daughter and was not allowed out of bed the next day to go and see her, despite feeling dreadful I was desperate to find out what was going on and to touch her. Every time a midwife came to my room I told them I was fine and that I wanted to get out of bed and go to the neonatal unit, strangely enough no one believed me. By the early evening I finally managed to persuade one of them that I had to see her, on the condition that my husband would lift me into a wheel chair and that I was only allowed 10 minutes she would take me with my husband to the unit. I was just so excited! It is so difficult to explain what it felt like being taken into the neonatal unit, the incubators everywhere, the wires, the monitors, and the silence except for the machines beeping now and again. I had no idea where my daughter was, I am not even sure that I would have recognised her. I was taken over the incubator where it had a card with my surname on it, ‘baby Ross’ we hadn’t even finalised her name. That was quickly done, Maia.

One of the nurses came over and asked if I would like to touch her, she opened the little window on the side of the incubator and let me put my hand in to touch her, she was so tiny, her index finger was the size of my thumb nail, she was in a tiny little prem baby nappy but on her it was up to her chest. Her chest was covered in heart monitors, another monitor was strapped to her foot, she had a name label around her ankle that looked enormous, yet now I would think it would fit her big toe. She looked so ill and vulnerable. I just couldn’t believe it when they asked if I would like to hold her, I just didn’t think that was going to be possible. When they lifted her out and put her on a cushion with blankets around her in my arms I just couldn’t stop crying. She was just so tiny and not like a proper baby, it was almost like a little animal making strange little movements, she really did look so ill.

Each day brought new challenges, I had to recover from the operation and get my strength back. I finally got out of hospital 5 days after she was born but would then be back at the hospital first thing every morning and would leave at around 10 every evening. A situation made more complicated by the fact that my husband was back at work and I was unable to drive due to the caesarean. Each day we wondered what would face us when we went to the hospital, one day she had a serious infection in her umbilicus, the next her skin was becoming damaged and infected due to it being so fine by all the monitors. Then she had a heart murmur as a duct in her heart had not closed properly due to her being born so early, it was going to have to be treated by medication and there was a risk of complications. She wasn’t gaining weight, she wasn’t feeding properly, she was being fed by a nasal gastric tube, (a tube up her nose and into her stomach) and I had to express milk for her to be fed.

Each day was just more and more to worry about.

Maia spent the first 3 weeks of her life in the intensive care section of the neonatal unit, compared to some of the stories you read about we were very lucky, she did well and seemed to fight her way through all of the issues she faced. I remember going onto the unit one day to find that Maia had been temporarily moved into another room, the intensive care room was shut with blinds closed at the windows and on the doors. I asked what was happening, another premature baby on the unit had died. It was so upsetting; we were just so lucky to be where we were.

At the end of the 3 weeks she was moved into high dependency and out of an incubator and into a tiny little plastic cot. She was still being fed through a tube in her nose and still had monitors attached to her but it was just the most enormous step forward. We could hold her more easily, touch her, dress her, change her nappy all very simple things but so much easier in the cot. They started trying to see if she would breastfeed at this stage, but no joy she was just too small, this was very frustrating for both her and I, as we had to try time after time. So a bottle was introduced, it was tiny and it seemed like she barely drunk any of it but each day she started to take more and more and her weight started to gain, all good news.

After two weeks in high dependency she was moved into low dependency, this was the last room before going home, such excitement. By this stage Maia was about 33 weeks, we had been told in the early stages that we would be lucky if she went home at 40 weeks, i.e. full term, it really depended on how well she did. We couldn’t believe it when we went in one day and found in her in low dependency, this really was a turning point for us until then we had bought nothing for her apart from a small teddy bear and a couple of baby grows. That afternoon we went out and bought all the things that were need for her, it was fabulous. We had just been too scared before to do anything in case it tempted fate. Even after buying everything we still kept it in its bags until about 3 days before we got her out of hospital. By the time we got to low dependency we were now adept at dealing with her, feeding her, bathing her, changing nappies, the nurses on the unit had been the most amazing help in showing us what to do and how to care for her.

We went in one morning about a week later and was told that if everything went to plan we may get Maia home at the end of the week, that it would be an idea if we stayed in the parents room at the hospital for a couple of nights with Maia in the same room as us. They wanted to check that we were comfortable with looking after her and coping with her needs. So Wednesday and Thursday night we stayed there, thankfully we passed the test and on the Friday we were told we would get her home on the Saturday. She would be 35 weeks! We were going to be taking her home 5 weeks even before she was due to be born.

Saturday soon arrived, that was it we were going home, it was so strange, she was checked over by a Doctor, we were given all her medication, vitamins, iron supplements, nasal drops the list seemed endless and that was it. We let ourselves out and headed home. The weirdest bit of it all was that when we got home, we put her baby carrier down on the hall floor and looked at each other, we just didn’t know what to do with ourselves, we were so used to being at the hospital with her we had no other routine to our day!

Once out of hospital we had the usual visits from the standard health visitor, that was actually not that practical as she didn’t have the experience of premature babies, she seemed more interested in asking whether or not I was depressed. The only thing that depressed me was her visits. The practical advice came from the Community Neonatal Nurse, ie one of the nurses from the unit who would come to your home once a week and check on the progress of the baby, she really was a great help and support.

Maia continued to grow and flourish every day, which was wonderful news, she was such a calm, easy going baby and very much in a routine having been at the hospital for so long. Hospital appointments continued, hearing tests to ensure that she didn’t have problems with that. Eye sight tests to ensure that she didn’t have retinopathy of prematurity, check ups on her heart to see if she needed surgery to close the duct that was still slightly open, appointments at the paediatric clinic, it did seem relentless. Unfortunately Maia always seemed as if she had a bad cold and chest infection this meant more tests being done trying to work out what was wrong with her, I recall going for the tests to see if she had cystic fibrosis and almost being ill with worry. Thankfully she didn’t, it was something else that was causing the problems. Each appointment was always a worry in case they found something wrong with her.

10 years on, Maia is a happy, delightful little girl. She can push me to the limit of frustration with her single mindedness and on the other side she can make my heart melt. I look at her in awe and amazement that she is ours, I still can not believe it.

Why should you support the unit, if it wasn’t for the help and care that nurses and doctors on the unit gave our daughter I would doubt very much that we would have her. Years ago we would have been lucky that she would have survived, technology and medicine has moved on so much. The equipment that the unit needs such as ventilators, scanners, respiratory monitors, are all equipment that were used on our daughter. They quite simply save lives! Without this we wouldn’t be where we are today. Our situation is not an isolated situation.

These are people just like my husband and I who would have faced some of the same heartache and worry that we have been through. It is vital that these tiny babies born so small and so early are given every opportunity and hope for the future. Donating money or funding equipment will do just that. Give hope and save lives.

Please support Born Too Soon and all the wonderful work they do.