Our miracle baby

Last February 1^st my life changed forever. At just 21 weeks my waters broke on the kitchen floor; 19 weeks before my due date. We had only the week before had the growth scan where we had discovered the baby was a boy, felt the first movements and I was barely showing.

On the way to the hospital I was already planning my baby’s funeral; all I knew was that when the waters broke you went into labour almost straight away. My heart was breaking into a million shards and I could barely breathe. At the hospital they confirmed that my waters had gone and then we were first told what was ahead of us; they strongly recommended termination as there was a high risk of infection which could lead to life-threatening septicaemia. They believed in most likelihood labour would start within the next 48 hours and it was highly unlikely that the pregnancy would continue beyond that.

I just wanted to hold onto my baby for as long as possible. Since my waters had gone it was like he had suddenly been energised and had started kicking like mad as if to say “I’m still here mummy fighting!” I wasn’t ready to let him go and so they took me to the pre-labour ward. I was placed in the bed in the middle of the ward surround by heavily pregnant women labouring, or trying to start their labour and it felt like further salt in the wounds, a reminder of what we would never have.

The next 48 hours were the slowest of my life, every minute felt like a year. I was clock watching the whole time; if we could just make it through the ten minutes that was ten more minutes with him. They had given me antibiotics to keep away infection, although I had been told any signs of infection; even a spike of a temperature and then the decision would be out of my hands they would take me to theatre and I wouldn’t have a say in it.

When it got to the last couple of hours I could barely breathe, I honestly didn’t believe we could last one hour let alone 48. My baby’s kicks were getting more frequent and stronger. After the 48 hour deadline a doctor came storming in and told me in no uncertain terms that I had left them in a really difficult position, they weren’t happy. They wanted this pregnancy ended and I wasn’t being co-operative.

Then the barrage began. We had teams of doctors coming round telling us that the baby had no chance of a future; his lungs wouldn’t develop and his limbs would be all bent and deformed from lack of fluid to help growth. That was if I didn’t die first from infection. They became so insistent and so stunned that we weren’t ready to terminate I began to feel as if I was really evil; submitting my child to nothing but a short life of pain and misery. I understand that doctors have to inform you of the worst case scenario but we were never given an alternative view; it was completely one-sided; there was no chance, no hope, just hell for our unborn child.

We came so close. It was only when we asked a large team of doctors and medical students what ‘lung difficulties’ there were actually talking about; would it be asthma or that he would never get off a ventilator, that the inconsistencies really began to show. They couldn’t give us an answer because they didn’t know. The same when we asked what percentages of babies had the disabilities they were talking about after the waters ruptured, what age gestation could the babies survive premature ruptures of membranes, what would happen in SCBU (the special care baby unit). Every question was met with uncertainty; no one could give us an answer to our questions. It seemed as if they had literally read it in a text book but no one knew any knowledge further then that. This suddenly swung things dramatically for us; with so much uncertainty and no actually percentages or figures about what they were predicting then how could we be sure and base such a life-destroying decision on what they were telling us. We had already beaten the odds and lasted the critical 48 hours; maybe just maybe we could survive the next 3 weeks and reach the crucial 24 week mark. (We had been informed quite forcefully that if the baby was to come before 24 weeks nothing would be done to save him as he would be regarded as a miscarriage).

It seemed impossible, but with every passing minute and with every kick I knew that he was fighting and holding on and that I had to fight for him too. We informed the doctors that we would like to speak to one of the neonatal doctors from SCBU as they would have a clearer idea of what we faced, but until then we wanted to continue with the pregnancy until labour or signs of infection showed. The doctors were stunned; they couldn’t seem to be able to comprehend that we weren’t having a termination. Only one doctor, the one that had confirmed my waters had gone on the first night, actually showed any care or empathy. Whilst giving me a scan to see how much fluids were left (practically none) I broke down admitting how evil I felt for wanting to continue with the pregnancy; he turned round and said of course you do, this is your baby it’s your job to protect it. Just hearing that compassion from a professional gave me the strength to have confidence in my decision.

After a week in hospital we still hadn’t spoken to a neonatal doctor, and on asking one midwife politely if she knew if one was actually coming she turned round and barked “their busy looking after actual babies”. Now I don’t want to give the wrong impression; I know the doctors were doing their job and the majority of the midwives were caring and supportive; however we did feel as if we were being bullied into trying to have a termination. After that comment I decided that I had had enough of waiting and wished to return home as I also have a daughter who was 18 months at the time. On discharge we were again informed any signs of infection we had to return, and over the next three 3 weeks I attended for twice weekly blood and swab tests and at 24 weeks received steroid injections.

When we reached 24 weeks it felt as if I had won the lottery; it was unimaginable that we could reach that mark and there was nothing on earth that I could have wanted more. It was truly miraculous. I had discovered a premature rupture of membranes support group on Facebook where women had ruptured even earlier then me and had gone on to have healthy babies. This was the hope I had been looking for; all we had been told was the negative but here was the positive. Everyone seemed to be told the same thing that there was no chance for the babies and that termination was strongly recommended. What I also discovered was that the waters can replace themselves; and that was evident as I kept having large ruptures throughout the three weeks, evidence I saw that there was water still being produced.

Then at 24 weeks I went into labour, we were transported to a more specialised hospital in dealing with micro premature babies. On the way down to theatre I was informed that a 24 week baby only had a 40% chance of survival, however for our baby the odds were a lot less due to the lack of waters for such a long period. In the end he was delivered by emergency caesarean where they found that I did in fact have a bad infection. Because the spinal seemed to not be working higher up and I began experiencing pain during the operation I had to be put under general aesthetic. I remember waking up and not knowing if my baby was alive. My husband informed me that he had named him Adam and so we waited for news. We were told that he was doing well and that he had in fact came off the ventilator and was on a less invasive breathing apparatus called CPAP. That evening we were taken up to see him and I was stuck by how long he actually was, of course he was tiny at only 1 pound 8 ounces, but he was bigger then I expected. His skin was bright red but all his limbs moved and were formed perfectly; in fact our little fighter was kicking and wriggling constantly, even the nurses remarked on it!

The doctors warned us that we had a long way to go; they expect premature babies to stay until their due date but with such a micro premature baby it would most likely be longer. He faced multiple risks of infections, organ failures, brain bleeds. At 5 days he had to be put back on the ventilator as he was struggling with his breathing. My family and I had developed a bad cough and so didn’t visit the unit as I didn’t want to put him or any of the babies at any more risks. It was a cruel blow and was soul destroying not being with him especially as I didn’t know if each day would be his last.

Attempts kept being made to remove the ventilator and return to CPAP but his oxygen requirements seemed to be increasing. Then during a heart scan they discovered a PDA; a small valve hole in his heart that normally closes after birth but was still open and oxygen not to be able to reach the right places. We had a rollercoaster few weeks waiting for a theatre place in a specialised hospital and luckily at 4 weeks when it looked like he might deteriorate to the point he was too weak for the operation he got a slot. The same day of the operation he came off the ventilator. We had been told that they expect after the operation for babies conditions to actually deteriorate for a few days but Adam soared. He quickly moved through less invasive breathing support until he was just on nasal oxygen.

At 6 weeks on my birthday I got to hold him for the first time, nothing will ever come close to that feeling. Having him close to me again where he was supposed to be; I never wanted to let him go. At 9 weeks he was transferred to a closer hospital and wore clothes for the first time. At 12 weeks he came off all oxygen and breathing support and was breathing room air. Then at 13 weeks we got to bring Adam home. He had beaten all the odds had never even got an infection and was coming home completely healthy not even on oxygen at 37 weeks gestation, 3 weeks before his due date. 

Those 13 weeks were the scariest of my life especially occasions such as when beginning bottle feeding at 34 weeks he choked on some milk went completely lifeless and had to be resuscitated. It took its toll and it took me a good few months of having him home to actually accept that he wasn’t going to die and that he was actually mine as at first he felt like someone else’s baby that I was looking after. I felt I had missed the first 3 months of his life and that he wouldn’t bond with me. It was only on seeing him next to a newborn that it hit me that I was still going to have all those moments and I had the rest of my life to have cuddles with him, yes we had missed out on a lot of the pregnancy and celebration on birth, but none of that mattered as here I had this beautiful and more crucially healthy baby and was more blessed then anyone.

 

 

At his last Paediatrician appointment the doctor actually called him a miracle baby. We are often told by medical and health care workers that he doesn’t ‘look like a premature baby’ he has none of the problems they would expect of a micro premature baby.

 

Adam is now approaching his first birthday and catching up with his development milestones. He is crawling and regularly saying “da da da da” and is still a constant wiggle monkey. He does have eczema and gets asthma like symptoms when he has a cold, but he very well could have had that at full term, and is nothing compared to the problems other premature babies face; even those born at later gestational ages. He is constantly smiling and the happiest little boy that could be. It sickens me to think how close we were to coming to ending his life, and I want people to be aware that there can be a positive outcome to premature rupture of membranes, that there is hope.  Adam has defied the odds and proved all the doctors wrong! I think there definitely needs to be a review of how doctors and hospitals treat pregnancies after premature rupture of membranes and feel there needs to be a study looking into it with the advance of medicine as it has been in current years.