29/01/2015 – 11/08/2015
On 29th January 2015 at 00.04am after a short, but quite painful labour, our second son Máté Árpád was born. It was such a relief that the pain was over and we were just overwhelmed with joy. While I have an older son Bence, before Máté I had had one miscarriage and it was almost exactly a year to the day since that baby would have been born. However when the midwife put Máté in my arms, I had a strange feeling, because his whole posture was so floppy that I felt he was going to slip out of my arms. I thought at the time that maybe that was because I’d had my first baby quite a while ago (two and a half years earlier). On the same day we were released from hospital and went to pick up our older son Bence from our friends who had been gladly looking after him while I was in labour and giving birth to Máté. His reaction was only "Oh wow a baby" and we went home.
After 3 weeks Máté had his first cold and we thought that’s alright, even though Bence had his first one when he was two and a half months, because every baby is different. Máté was a calm baby and slept a lot but if he was hungry he had a voice and he ate a lot. He put on plenty of weight but he didn't really move. After a few weeks, when our wonderful health visitor came, I mentioned that Máté was still not making any effort to lift his head up and that he was making noises when he was eating. Our health visitor wasn’t satisfied with the head control, but she told us to wait a bit and we would check his development at the next appointment. She also referred us to a tongue-tie clinic just in case. When we went there we were told that Máté’s tongue was tied and they would need to operate to release it. It was an absolutely horrible feeling for me when he was taken away. After a few minutes the nurses brought him back to me and he was so upset and red from crying, that it made me cry as well. As soon as I breastfed him he calmed down immediately.
In March we had our first check up with the GP, when Máté was around ten weeks. We mentioned to her that Máté had a cold which didn't seem to have gone away because his breathing was continually noisy. She was satisfied with his development even though Máté in the meantime wasn’t moving, apart from a little bit of arm and leg movement. She said that he was a bit behind in development, but it was nothing serious and she’d see him in six weeks’ time. One week later our lovely health visitor came in the afternoon and noticed his noisy breathing straightaway. She didn’t like that at all and advised us very strongly to go straight to A&E. She told us to also mention his poor head control which hadn’t changed since the last visit.
Máté had to stay at the hospital overnight for examinations. The next day the long hours of waiting continued. Blood and urine samples were taken. I asked about Máté’s breathing and the doctors examined him with a stethoscope but did not do a chest x-ray. Later on he had a head X-ray as well, the results of which were negative. And that was it, we could go home.
In May Máté had another head-ultrasound which was also negative. But all the time Máté was constantly breathing noisily. The days and weeks passed and despite a wonderful melt your heart smile from Máté his movement just didn't develop whatsoever, and the noisy breathing remained. When our lovely health visitor came again, we mentioned that we were planning to go home to Slovakia and to Hungary (where my husband comes from) for five weeks to see our loved ones and to have Máté`s christening. We were worried about how to carry him because he still couldn’t hold his head properly. She advised us to use a stroller instead of a baby carrier and also asked us to get our Consultant’s opinion about it as he was dealing with Máté’s case. One week before we left the UK Máté had his first physiotherapy session and a check-up with our consultant. On that same day a blood sample was taken for chromosome testing and also a urine test. He agreed that we should use a stroller and we could fly home.
On 15th June I flew home with our two sons, because Daddy doesn’t get that much holiday off, so we went two and a half weeks earlier. It wasn’t very easy with two kids, but thank God there were people who helped me out. Bence was excited about his first flight and as soon as the plane levelled out he’d fallen asleep. Not like our precious other one, Máté. He was quietly crying all the way through. I didn’t know what to do with him. I breast fed, changed his nappy, but nothing seemed to help. With hindsight it was probably the air pressure which made him unwell up in the air. In Hungary at Budapest Airport my brother-in-law was waiting for us and we went back home to Slovakia where I come from. My whole family were together and they welcomed Máté and were overjoyed. Máté still didn’t show any sign of proper movement, even though we had been doing exercises. On one occasion while I was talking with my mum, we agreed that I’d take Máté to our local GP who I know quite well, just to get some advice about his movement and breathing.
The GP gave us some cough medicine, because she noticed that he had a bit of a cold. She also asked us to come back on the following Monday for a check-up. At the weekend Máté wasn’t very well, because he had a temperature and was also teething. Daddy finally arrived by car some two and a half weeks after us. That night Máté just couldn’t sleep and wasn’t eating at all. He was just crying quietly and continually. After arriving at the Slovakian GP the next day, she told us to go to hospital straightaway. When we arrived and took Máté out of the car we noticed that sticky stuff was coming from Máté's nose and mouth. It was scary and we rushed into the hospital. After waiting for a while, the nurse asked us to put Máté on the table so the doctor could examine him. At that exact moment Máté had gone grey-purple and stopped breathing! Everybody was rushing about and Máté was taken away. He was intubated and at the same time secretions were sucked out many times. The doctor said that they had stabilised Máté, but he was in a really critical condition and would have to be transferred to intensive care in a bigger hospital. We went there in the emergency ambulance with the siren on all the way.
After arriving at hospital Máté was put on an oxygen mask. On the next day the doctors asked me to feed him, but Máté didn't want to eat at all. So after that I had to express breastmilk and it was given to him through a tube. The consultant told me that Máté had double pneumonia and that one lung wasn’t working and the other one was full of secretions. That afternoon Máté had to be put on a ventilator because he was so exhausted trying to breathe with an oxygen mask. The doctor attempted to take Máté off the ventilator, but without success and we were told that he just cannot breathe for longer than twenty eight hours without the machine.
After all this we knew that we were not going anywhere from that hospital, so he was christened there. After two weeks, the doctor said that they had done what had to be done, but they cannot do any more as genetic and other further tests would have to be done in the UK because Máté is a British citizen.
Oh that was a very big issue! Where to go? Who to ask? But with God’s help we managed. The EHIC and travel insurance covered everything and a private medical plane took us home.
When we arrived at the hospital they started to change all the tubes and everything on Máté, it was heart breaking to see...all the injections and needles and everything. I couldn’t hear Máté`s voice because of the tube, but it was enough to watch his face with tears pouring down and on mine too. I just couldn’t do anything to ease his pain. I was just holding his hand and gave all the leading to God.
The following week his blood sample was sent for a genetic examination. It would normally have taken at least six weeks, but because Máté’s condition was so bad the results were hurried through by the doctors.
Máté was continuing to breathe with the support of a ventilator and he was in pain after the regular suctions, but despite that he gave us plenty of beautiful and heart-warming smiles and stared at us intently, as if he was reading our minds.
In the week when the results arrived we were called to talk with the main Neurologist. They explained that the genetic results showed that Máté had SMA (Spinal Muscular Atrophy), Type 1 which is the worst group and we were told that he had just weeks left! That was an absolute disaster for us and we couldn`t understand how we had got to this point?
During this time we lived in a Ronald McDonald’s charity house for free and we couldn’t be more grateful, because it was just opposite the hospital. I was continually taking breastmilk across and we visited Máté. During the time in hospital I met two other Hungarian mums who gave us great support as well. Also thank God, my husband was allowed time off work because of the difficult situation, so we were together for the whole time. Our other son Bence wasn’t really aware of what was going on. He liked to visit his brother, but he didn’t like the hospital and its restrictions as he couldn’t run around.
Our little Máté carried on smiling and staring at us with his beautiful eyes when we talked or sang to him. His hair always stuck up no matter what we did and that made him even cuter. He also loved bath time and to snuggle up in his blanket. He was just so beautiful, but he was in pain especially when time for suction came. And the suctions got more and more frequent, closer to the end.
Máté got an infection and we were given options for his care. After two days we decided on ventilation with a mask but we wanted to wait a week because there were more friends who wanted to see him and say a final goodbye. That was hard!
These days and weeks weren’t without tears and heartache as we realised we were going to lose someone very special. But we got as much strength as we needed for the day from God.
The unwanted Monday had come. In the morning we took Bence to say a final goodbye to Máté, his precious brother, and took him back to McDonald’s house, where our dear friends had been waiting for him with their kids. They had looked after him while we were at hospital during the final days.
In the afternoon the change over from tube ventilation onto a mask with support connected to ventilation took place.
During the second day we were asked when we were going to take the mask off, but we just couldn’t or maybe didn’t want to decide. On Tuesday afternoon I prayed with my husband loudly and we asked God if he wanted to take Máté, then take him, but left it to God, not us, to decide when Máté had had enough of his short, but precious life.
Later on our prayer was answered. When I expressed milk, suddenly I noticed the oxygen level had started to drop and after that the heart rate fell rapidly as well. I lay next to Máté, and with my husband we spent the last few minutes together. It was heart-breaking. In the midst of crying I couldn`t really talk, I just said Psalm 23 (from the Bible). When we saw there was no way back, we asked the nurse in the last few seconds to take the mask off so we could see him, his beautiful and peaceful face. He left us in his sleep on 11th August 2015 at 16.40.
Our sweetheart Máté’s life was short, but made a huge impact on our and on other people’s lives. His loving memory will always stay with us forever.