This new series, My Journey with…, is tackling some of the hardest topics us as humans have to endure on Earth. The truth is that we are all terribly fragile. Things go wrong with alarming regularity and none of us are immune…
Today’s Journey is shared by Michelle, a brave mom of 5, who lost her baby twin girl at 66 days old. She shares her story below…
TRIGGER WARNING: This post deals with the topics of death, premature birth, grief etc and may be triggering to those dealing with similar issues.
After a very normal, but stressful pregnancy, I suddenly felt as though my babies had dropped. I was so scared for my gynae to do an internal exam that I went home and then landed up going back later that day and had my worst fears confirmed: I was dilating. We were not sure how fast I was dilating so was told to sit legs up and come back on the Friday. I did try to rest, but I had a 12 month old who had just started walking! The Friday she said she would have to deliver as she didn’t think I would make it through the weekend. I had had steroid injections the week before for their lungs and they were a good weight for their gestation and so my twins were born at 29 weeks on 19 February 2010.
Ryan weighed 1,2kg and was the fighter, he was on a ventilator for a long time, then cpap, Megan weighed 1,1kg and was on cpap (something to increase the pressure of their own breaths).
When I first saw them I just burst into tears they were so tiny, I could hardly see them for tubes, pipes, drips, breathing machines. It was so scary. They both had lines through their navels and even had a monitor to keep them at constant temperatures. They had so many monitors for breathing, heartbeats, blood pressure. Every time a monitor went off a nurse would come and sort them out. They were also both under the lights for jaundice at one stage. I had to buy preemie nappies for them and even those looked big. At one stage their weight fell to under a kilogram.
Ryan was the weaker one, he had a brain bleed and he kept having apnea (stop breathing frequently). He got a bacterial infection a week after being born and was in isolation for a while. It was touch and go with him from the start. He also received blood in the third week. Ryan had a valve (pda) in the heart which hadn’t closed when he was born.
I went up twice a day, in the beginning they were in an open incubator which monitored temperature and it was covered with plastic to prevent them from loosing moisture. We were allowed to put our hands on them gently and talk to them we could not pick them up. They were given the sweetest preemie dummies to encourage them to learn to suck, they had nasal tube fed with a syringe and when they were fed they were given the dummy to suck. There feeds started at 1ml an hour. They both had bad reflux (can’t keep feeds down) and did not tolerate the feeds at all in the beginning. Often they didn’t tolerate feeds so the feed was reduced and they were given a few days and then it was increased again. They were fed every 1 hour initially, then 2 hourly, then 3 hourly.
Slowly we were allowed to help change nappies, it was so exciting. Megan took it day by day. She was the stronger one. I finally got to hold Megan at 3 weeks old and a few days later we held Ryan. I held them together for the first time at one month old. It was a struggle to wean then off the oxygen, but they got stronger and by 5 weeks old they breathed on their own. When we held them and it was feeding time we would hold their feeds for them and afterwards they would fall asleep on own chests. We did a lot of kangaroo treatment.
They moved to a closed incubator at about 5 weeks old and to a bassinet about 10 days later. They had their first bath at 6 weeks old. When you took the one twin away to bath the other would cry until you put the other one back. They lay together quite a bit, but made each other so hot. Slowly they learnt to suck and finish their bottles. Then the week we thought they would come home they both got a virus…
We went to visit them the Wednesday night and their temperatures were up and they wouldn’t feed. The nurses took blood and about eleven that night they went into isolation for 4 days and went back onto cpap to help them breathe. They were taken off feeds and put on a drip. A physio came to remove the phlegm off their chests. The Saturday night we gave them a bottle and they finished it.
That Sunday they came out of isolation and I spent the day up at the hospital learning to feed both and getting into the routine. They were put in their cots closet to the door and I was so excited at the fact they would be the next babies to be going home. At this stage we had seen so many babies come and go and had been there the longest in the unit. It was like we became part of the furniture.
The Tuesday night we were busy getting their room ready. Everyone was so excited the twinkles were finally coming home, we had been waiting for this for long. I had been up at the hospital most of the day. That night the nurses told me to take it easy and rest as the twins would be home soon and then I won’t have time for a rest.
I wasn’t going to go up, but I thought I’d pop up for just half an hour. When I got there it was hand over with the nurses and it was the time in the neonatal unit that you couldn’t go in and had to wait until they were finished. I heard Megan from the time I walked into the Maternity ward. It was so strange she never cried so loud, it was a different cry. When they saw me they told me to come in and hold her. They thought she was hungry. She wouldn’t settle. I was in tears and wondered why my baby was so unhappy. The nurses told me to go home and rest she would be okay. Call it a mother’s instinct but I couldn’t sleep, something just was not right. At 1am on Wednesday 21st April I phoned the Neonatal Unit to find out how Megan was. They said she wasn’t settling but had called the paediatrition. At 6am the paediatrition called me I initially thought she was phoning to tell me I could take them home. They said she had taken a bad turn, they had put her nasal gastric tube back and she had gone into isolation. I asked if I can come up and talk to her.
I got dressed and rushed up to the hospital. She looked terrible her stomach had swollen up and she looked very sick. I just broke down. When I spoke to the paediatrition we were told they think she may have a stomach infection and that she may need to spend a few weeks more in hospital as that takes time to heal. Over the course of the day she seemed to deteriorate, her stomach swelled up so they didn’t put her nappy closed. She looked like a little oros man. A lot of blood tests and X-rays were done but nothing seemed to tell us what was wrong. I said to the nurse that day ‘Megan is very sick and I’m so worried’ she looked at me and said ‘yes if she was my child I would also be very worried’ those words stuck with me.
That night we were told it could be necrosis when a small part of a babies bowel dies, fairly common in newborns, and that they could operate and remove it and it would be fine. We were told we could take Ryan home but we decided we would take him home the next day and Megan would follow later.
Just after midnight I phoned and was told Megan had crashed, she had gone on a ventilator as her lungs had collapsed due to the size of her tummy. The paediatrition phoned me at 5am and I told to meet her up at the hospital she was going to put lines in and needed to talk to us. We were told they were going to operate, they were not sure what was happening, but that they had a professor from Red Cross to operate and they were just getting the rest of the team together. They didn’t know what was happening but the area around her naval was discolouring, and that they would open her up and do whatever necessary.
Words don’t come close to the way I felt.
At this stage we were told to leave Ryan in the NICU until we knew what was happening. We were told to go for tea, while they prepared her for theatre, they had to put a special kind of blanket around her to keep her temperature up and take her off the oxygen and bag her until she reached the theatre. We kissed her and the team headed off to theatre just after 11am on Thursday 22nd April. We waited in the maternity waiting room, we then saw the nurses busy and we were told to wait outside as the doctors wanted to talk to us. My first thought was “She’s still alive”. Just after 1pm the surgeon walked in, he looked at me and shook his head, I suddenly went ice cold. He said he opened her up and the whole small bowel was white, it was all dead. They went through it all and there just wasn’t any bowel to save. She only had 2cm of alive bowel. I just went cold I asked what we going to do and he looked at me and said there is nothing, you can’t live without a small bowel. That’s the part that absorbs nutrients. I said no there must be something you can do, I couldn’t believe what I was hearing….
A blood clot had lodged in the outflow of the small intestine and starved the small bowel of oxygen and slowly the bowel had died. This is something not seen often and is something freak. He looked at me and said “I’m so sorry she is not going to make it”. I looked at him and just passed out. I was taken down to the emergency unit.
Later I was taken to her and allowed to hold her on a pillow. She was on morphine, the ventilator and drips. We got her baptised. We were told we could stay at the hospital. The Friday we spent holding her. The Saturday she was still with us, we were advised to take her off life support, as every time they removed the fluid off the lungs it helped her breathe better again. She was still weeing, even though the drips had been taken down.
We dressed her and took photos of her and that afternoon we took her off life support, she just had a oxygen and pulse monitor. She would kind of stop breathing and her pulse would drop so low for so long and starve her of oxygen to the brain, her temperature was 32 degrees then all of a sudden she would breathe better and her pulse would be normal. Such a little fighter. Off all the support she continued for another 24 hours.
Her whole body became infected by the bowel contents and slowly each organ collapsed. We didn’t know how long she would go on for and so decided we would take Ryan home, we lay our twins together and took photos of them, and with us and the nurses. We told her we were going to take Ryan home. She had a very strong heart but eventually at 11:20am Sunday 25 April 2010 our sweet princess Meggie Moo passed away at 66 days old, weighing 2,3kg. She was at peace and knew we would take care of him.
My little girl went from healthy to critically ill in a few hours and my life was turned upside down and will never be the same.
Ryan is doing so well you would not even know he was a preemie. Our older son tells us ‘Megan is in the sky playing with the butterflies’. She will always be apart of us she’s in our hearts forever. We miss her terribly, people tell you to move on, but loosing a child is like loosing a part of yourself. Part of you goes with you when your child passes away.
We lost a lot of friends and family when we lost Megan, I think people don’t know what to say. Sometimes you just need to feel people care, they don’t need to say anything. We have photos of them and her in our home and we talk about her. Ryan and the others get very excited. As Ryan has gotten older he asks lots of questions and we answer in simple ways so he understands. The pain doesn’t get easier, you learn to live with it but it is like part of me went with her when she passed away. I love talking about her and mentioning her name, as she is my child and I am her mother and will always be whether she is here or running amongst the flowers in heaven.
Each year my friends and family wear pink or something pink on the 25th of April and we let balloons go at 11h20 the time she passed away in my arms
What, or who, helped you to overcome or push through this experience? A book, a person, an incident, therapy, medication or was it just simply time?
Spending quality time together especially with children. Chatting to family who were there for us (many never mention her which hurts a lot). Talking to one or two close friends. I also joined a support group of parents who had also lost children and became close with two people there. Talking to other parents who have walked the journey and know what it’s like helped. If you’ve never lost a child you will never understand. A lot of people say you need to move on and that hurts. You learn to laugh and smile again, but the pain never goes. No parent should have to go through the pain of loosing a child. There is no word for a parent who has lost a child. If you loose a spouse you’re called a widow or widower. If a child looses a parent they’re called a orphan but if you loose a child there is no word. The loss is like no other. Talking to parents who have lost a child really helps. I enjoy chatting to Angel parents. Time has eased the pain but sometimes a smell or seeing something will bring the memories flooding back.
Obviously there is not always a reason for going through such hard times in life, but now that you have are further down the journey can you share any insights or personal growth that the experience taught you?
We have found that the it’s the people you least expect that are actually there for you. After a very down patch in our marriage and dark time, we are stronger than before and we feel if we can deal with that, then we can deal with most things. No amount of time will take away the hurt and the longing to hold your child again. Years go by, but each year, especially at certain special times, the heart aches. No child can replace the child that has passed but they do help ease to ease the pain. Spending time with loved ones helps too. It’s important to be honest and explain to them that some days are hard as this can help them to be with you. Life is precious.
Where do you find yourself now? Please share an update on your current space to encourage others who find themselves in the midst of the “tough stuff” right now.
We still struggle with her passing but we try to celebrate the life and the short time we had with her. I recommend that you make a memory book or garden and light candles on anniversaries and special days like birthdays. We long to hold her and often watch her twin and wonder how she would have looked and acted. We think about what her personality would have been like and how different our own family would have been. We feel we have a Angel watching over us. Our eldest grew up quicker than most children as he was still small but had all this going on around him. It’s important to talk to each other as a couple and make special time for each other. We also always talk about Megan, if someone asks me how many children I have a say 5. I gave birth to 5 children.
If you have experienced a death in the family and are struggling with grief or need bereavement counseling, please contact one of the organisations below.
A 24-hour free and confidential telephone counselling service
Tel: 0861 322 322
Words & Images: Michelle Tito