To have special needs is to have a unique power: Journey to becoming a special needs mom

Part one:

In December 2013, I did a pregnancy test and got a positive result. We were getting ready to leave for the Christmas holiday at my parent’s house, as we do every year. Christmas is my mom’s favourite holiday. I may have started the tradition years ago when I and my family first moved to Germany and I was fascinated by those classic Christmas films as a child. But seeing as my mom starts prepping for this holiday starting September. I think it’s safe to say that this was her day and saying no to the visit, was happily not an option.

‘Okay,’ I said. ‘I am pregnant but first, I want to take it all in and go to the doctor after the holidays’.

A few days passed and I had the worst nausea ever! I couldn’t eat, nothing would stay down. 

I was extremely exhausted and weak. This was my third pregnancy and I never felt like this so early on. I remember my first pregnancy very well, I realised I found out on St. Patrick’s day. It was probably the last time it was sunny on Paddy’s day ever since. I was 6 weeks in and had no symptoms. The second pregnancy was a breeze, I had no idea I was pregnant until I was 10 weeks in. Yet here I was, feeling 2-months symptoms when the test said 1-2 weeks. What was going on?

Christmas came and I did not get to enjoy any of the food we prepared, and at this point, I pretty much told everyone in my family I was pregnant. Christmas passed and we were still with my parents. A couple of days later I woke up not-feeling-pregnant and I was super hungry! I prepared myself a plate full of traditional Christmas-ey food, chock full of plantains, and barbeque and I ended up finishing it. My breasts were still tender, and that day I noticed that I didn’t feel anything, so I thought ‘all good’. 

The next day was the 7th of January 2014 I woke up and went to have a shower and while I was showering I noticed that I was bleeding. Not heavy bleeding, but blood clots. So I rushed through my shower and ran downstairs where my mom was, with my brother and I said ‘Mom, mom I’m bleeding’. It took her a second to realise what was going on, and she said that this was not normal ‘you are pregnant’. My mom and brother suggested I go to the hospital, so

I called my partner and he brought me to the hospital. I was quite calm but a little confused.

We went to the maternity ward and I got examined. They examined the blood clots on my pads and they came to me quietly and said ‘We are sorry but you are having a miscarriage’. They then proceeded to show me that it was the sac that came out. I asked them, ‘What do I do now?’ 

‘Nothing’ the doctor said, you are losing everything naturally so all should come out in X days. You can return soon after and we will do a blood test to see if your hormones are dropping.

They didn’t offer me a scan or anything like that, so we made our way back home to my parents. 

At first, I didn’t feel anything. With the holidays, I was pretty distracted and I wasn’t attached to the pregnancy, so I thought okay, fine. I am having a miscarriage. I am the first in my family to have a miscarriage so I didn’t have anyone with a similar experience to really talk to.

Soon after, I went in to get my blood test and they told me that my results will be available the next day. This next day happened to be January 14th, the day my mom and I were traveling to Paris. It was my first time traveling alone with my mom, and though Paris has always been a holiday destination for us, we thought let’s have a girls’ trip!

When we arrived at the airport the nurse called to tell me that my hormone levels are over a thousand, which is strange because I just had a miscarriage a week ago! I was asked to return for some more testing the same day. I remember being torn between staying and getting on the plane. It was such a movie moment. In the end, the pilot had to wait for us to get on that plane.

We arrived in Paris and we visited my newly wedded cousin and his wife whom I had never met before. Everything was fine and cordial until it wasn’t. I hardly remember anything from that day. An hour later I started to feel really dizzy. The walls were spinning, a little like I was forced to play piñata except, I was spun around a hundred times. 

I asked my mom to cover for me as I was literally not able to open my eyes. The dizzy spells were on another level. A couple of hours later I felt better and my mom said maybe it was due to the miscarriage and losing all that blood. We continued our trip as planned, and everything seemed fine, except my body and taste buds were not 100%. 

When we got back, I made an appointment with the doctor and they saw that my hormone levels were still rising. So they decided to book me in for a scan. Before my appointment, I found myself very emotional. I remember I was folding the kids’ clothes and I just started crying. Between the history of the women in my family, my personal journey with childbirth and yet feeling so alone in this. I was distraught. As if it had just hit me that I had a miscarriage. Probably because it did.

As days went by, I would go to my bedroom and cry about a baby I never met. A baby that didn’t even get to grow? I felt so alone. Neither my family nor my friends had experienced miscarriages before. I grieved. My partner didn’t understand why all of a sudden I was so upset. After all, I was fine before.

Little did I know my hormones were playing tricks on me. I would have moments where I would go to my room. Away from my then 2 and 3-year-olds and cry, cry, cry.

Finally, it was time for THE scan.

It was the start of February 2014. My then fiancé and I went in for the scan and expected them to tell me that everything cleared up nicely but instead the doctor said ‘Congratulations there is a heartbeat, you are 10 weeks pregnant!’

We were so confused and asked them how? I had a miscarriage just 3 weeks ago, how am I still pregnant? We were being careful because of the bleeding so they went on to explain that I was pregnant with twins, and lost one of them 3 weeks ago and because I was not scanned there was no way to spot the other pregnancy. Immediately, we rushed home and did another pregnancy test. It was positive The whole time I awkwardly went through flashbacks of me drinking and whatnot. I had no idea I was still pregnant. 

After the shock, came the excitement, except my mom and partner were pretty angry that the first doctor didn’t offer a scan after the miscarriage. Being a logical person my partner couldn’t help but compare the system to that of Belgium. I mean sure people had just got back from the holidays but it was no excuse for being so lackadaisical. All my mom could talk about was the missed opportunity to take care of me. I was supposed to have twins after all.

Weeks later we finally accepted that there was a new baby on the way and because I already had a boy and a girl we had a bet in the house about which team would win. boys team? If it is a boy or girl team? If it is a girl.

The day of my 20-week scan came and I brought my daughter with me because she was a full-on “team girl” and we wanted to find out the sex of the baby. I saw the nurse and the midwife, and now it was time to see the gynaecologist for a scan and the final update on how the baby is doing.

The whole time the doctor (who was a sub by the way) was quiet and took a really long time to get back to us. Finally, she said ‘Okay, you are all done’. Wide-eyed, I anxiously asked her who we were having. Boy or girl? And she said, and quite frankly to my annoyance. ‘I can tell you that in the next scan’. 

I was a bit irritated. This was my third child. I knew the process! At the 20-week scan, you should be able to find out the baby’s sex, and if all is okay with the baby’s health. I had a bet to win for Pete’s sake. But this doctor only tells me to take this letter and bring it to reception for my next appointment. She was so cold towards me as if I had done something wrong. She saw that I had my 3-year-old girl with me, and I very well told her about the bet going on at home! Yet she was ice.

Being as hormonal as I was I couldn’t accept that we didn’t find out anything that day, so I started to cry to my partner. Complaining about how mean and unfriendly the doctor was. That coupled with the frustration my family felt over the skipped-through scan, after my miscarriage, gave me the fire I needed.

Earlier I had joined a community called Mums World on Facebook where women shared bad experiences with maternal care, and got advice from other caregivers. I decided to post what I had experienced and over 20 people responded saying ‘Call the hospital, tell them how you are feeling they should give you another scan’. I did just that and the person on the phone was very apologetic and reassured me that they will do everything for me to get seen the next day.

The next day I made my way over and luckily I was met by the same doctor that delivered my daughter 3 years ago. Lovely lady. She scanned me for what felt like hours and then said ‘Congratulations you are having a little boy!’ I was so excited to run home and tell the boys they won, that the next thing she said I was more hearing than listening to her. I really didn’t ask any follow-up questions. I mean what else is there? The worst already happened, and I have two healthy babies at home so I got this! 

Anyway, she went on to say ‘The baby has fluid in his stomach and we will need to keep a closer look at it, so we are sending you to Dublin for the specialist to review.

However, there is nothing to be worried about, all seems fine. We only need to verify the cause of the fluids.

I thanked her and went to the reception, where I was told from now on all my hospital appointments will be in Dublin even though it seemed strange because it was over an hour away, at that time it wasn’t really sinking in. I was elated.

I went home and told the boys that they won because we were having a boy and my little girl wouldn’t stop crying for the next hour. She already had a brother and was really looking forward to having a sister. Being such a girly girl and a creative mastermind, she already planned out the next few years with her little sister. She would wear purple while her clothes would be principal pink. She was very inconsolable that night, she wouldn’t let anyone touch her. I sort of felt her pain but my brother was my best friend so, I couldn’t really relate.

For two weeks I waited, and during those two weeks, questions started to run through my mind. Why would I need to change hospitals? What does it mean when there is fluid in a baby’s stomach? I became more active on Mum’s World and saw a post that mentioned fluids that related to Down syndrome but I didn’t think anything of it. I said to myself surely if it was something serious, they would tell me already? Right?

One day in particular I remember so well. I remember nothing else but this piece of that day.

I went to the petrol station and as I was leaving I let a pedestrian pass. Something was different with this pedestrian. It was a young lady, as I was waiting for her to cross she turned around and looked at me but she gave me a deep stare. It felt like she was looking into my soul.

Something about that stare never let me forget her. She was wearing a red bomber jacket and had a brown backpack. She also had blonde hair and was all on her own.

For the next 2 weeks, I started to think maybe my baby has Downs syndrome, but I would reject it and try to stop overthinking. I didn’t.

The 6th of July came, and we asked my brother to drop us off in Dublin. As planned he would babysit the other two as we went to see the doctor. When we finally got to the hospital. The doctor scanned me for ages and finally said your baby has something we call a ‘double bubble’ or in medical terms duodenal atresia. 

My heart started beating fast. She went on to say we can’t confirm 100% in the scan, but we can see some signs. First, the bone on the baby’s nose measures shorter than expected, and so do his legs and thighs. The baby’s bowels were not formed properly so the baby would need surgery right after birth.

My partner, God bless him (loves everything medically related). So he starts asking all the questions, while all I can do is fade into black, remember the encounter with that girl, and that post on Facebook. Physically I was there but mentally I wasn’t. Everything was going through my mind.

When I came back to my senses I asked, ‘how can we be sure?’ The doctor said you can do this thing where they take fluid from the stomach through a small needle However, there are risks involved as an after-effect can be bringing you to early labour. The baby will have a 50% chance of survival, as his lungs won’t be strong enough. He might not make it out of surgery.

I asked ‘what are our next options?’ and she said you can go today for a blood test and get it confirmed after a week. The other option is, if you feel you don’t want to go through this you still are within the two-week window to terminate the pregnancy. (I was nearly 23 weeks pregnant and having an abortion in Ireland was illegal at the time). But being an advocate she still offered it to me. I looked at my partner and said that is not an option for us. No matter what the circumstances are. ‘I am not having an abortion, plus you said as it stands it is still 50/50 correct?’

She said yes, and I said ‘Get me that appointment to get my blood taken’. We went to the other side of town and paid €350 for a private blood test only for them to say that we will get our answers in a week. Sigh.

We went home, where my partner calmed and reassured me. Telling me everything will be okay. My partner had gotten a job offer in the West of Ireland while at the time we were living in the Midlands and the day they would call with the results he wasn’t going to be with me. So I reassured him as well. Told him I will be fine.

One week passed, and on a Tuesday afternoon at 3:00 PM, I was called by the test centre that there was still only a 50% chance however, my blood is showing that there is in fact a high risk that the baby has Down syndrome.

I began to shut down. I was alone with two young kids to deal with the news I had just received, and my partner could not come home. I felt I had to be strong for my kids, so I couldn’t cry! 

Instead, I looked inwards, and there it was: the guilt. I started to blame myself. I started thinking of everything I may have done to cause this. I remembered how this pregnancy started, the medication I did and didn’t take, and how I never took folic acid because I didn’t know I was pregnant. Sometimes I would cry in the shower while the kids were asleep.

Going to Dublin for my appointments started getting more and more difficult. I started to show and I had young kids to take care of. My mom suggested I ask if I could be transferred to the West of Ireland because she lived there. It was also the same city my husband worked in. Long before this pregnancy, my mom will share her fantasies with me and my sister. Fantasies of being a grandma to another little one, one who would live with her and attend the cute little school under construction next to her lovely home. 

I had just gone back to University at the time, pursuing a part-time Bsc. in Business Management, no way am I dropping out, no way am I moving. I loved it in County Loise, it was perfect, subtle, and down-to-earth, nothing like the other places I lived in. We made so many memories here. Plus my parents will be all up in my business, I finally got my independence. Things were going so well. But what other options did I have? 

My mom could hear in my voice that I was hurt and was hiding it, that I was scared but didn’t want to show it. ‘Move here Doncil’ she said, ‘So I can take care of you and the kids’. Two months later, we found a house and moved, and that summer I lost myself. That summer I didn’t know what joy was, I didn’t know how to have fun or be happy.