Pregnancy & Birth Story.
Anyone who has gone through a pregnancy knows that those nine months can be full of surprises. My third pregnancy was ‘one for the books’.
Apart from the usual tiredness and nausea in the beginning, I would say that my pregnancy with Lucas was pretty close to perfect. My blood pressure was always right where it should be. My blood tests and urinalyses always came back with good results.
In fact, my first two pregnancies were much more complicated. During both, I suffered from liver cholestasis, which causes problems with the bile acids in your liver and blood. The symptoms present with an incredible amount of burning and itching, which can leave you red raw and very sore from constant scratching. (During my second pregnancy doctors discovered that a benign tumour, non-cancerous, on my liver was the cause of the trouble.) There is no remedy for it.
After my second pregnancy, I was told that there was an 80% chance of it happening again if my husband and I chose to have another child. We were advised that it would be best if we didn’t have any more children. So that was our plan.
Two and a half years later, Scott and I decided that two children just weren’t enough. Together, we decided to try for just one more. After an agonizingly long year and a half, our dreams came true when we fell pregnant. Due to my previous complications, it was decided that I would undergo more frequent scans. Luckily, Scott was able to accompany me to the 12-week and the 20-week scan, where we learnt that our baby was growing nicely.
And then the Covid-19 lockdown hit. With medical facilities restricted to handling the alarming numbers of coronavirus cases, my additional scans were not deemed essential, and I was on my own for the duration of my pregnancy.
And my pregnancy went great, until one week before I was scheduled to be induced, when I no longer felt Lucas moving. It was decided that I would go to the Day Care Unit at the hospital each day for monitoring. Although the monitor was picking up some movements, I was not able to feel them and requested a scan. The scan showed that even though my waters were not leaking, the amount of amniotic fluid was less than what was expected at that stage in my pregnancy. The mystery was, Where was the fluid going since I was not experiencing any leaking?
So it was decided that I was to be induced. Now, I’m no stranger to this as both my daughter Robyn, and son Harry, were induced as well. But this time, I was on my own. Due to Covid-19 restrictions, Scott was not permitted to be with me during the induction. I could not even have a midwife there to sit with me. I truly, literally, was on my own.
The midwife was not able to break my waters, so I had to have a pessary inserted. I knew from my experience of giving birth to my son Harry that the labour would progress extremely quickly once that was done, and the thought of that happening again terrified me, as I had neither my husband nor a midwife by my side for this one. As I feared would happen, the pessary overstimulated me, and I very quickly went into labour. Sobbing my eyes out, I was able at least to talk with Scott on the phone, who had decided to make his way to the hospital and talked me through from his spot in the hospital car park.
The contractions were coming fast and furious. I couldn’t talk, I couldn’t open my eyes, and neither pain medicine nor bath offered any relief. Finally, I was checked and at 4 centimetres dilated I was told we would proceed to the birthing unit where thankfully Scott would be able to join me. I was grateful that a midwife would also be at the ready. After forty-five minutes, the midwife told me to push on my next contraction. I remember gripping Scott’s hand and screaming,
I can’t! I’m scared!
Now, I always think back and wonder if I had some sort of sixth sense that something about this birth would be different. My easy, relaxed third pregnancy was turning into an enormously difficult experience that I hadn’t expected. In that moment, I felt absolutely terrified, though I couldn’t say why.
On 5 April 2020 at 20:01, baby Lucas entered the world. Because the umbilical cord was so short, he reached only as far as my belly, but at first sight, I instantly fell in love. He was perfect. Lucas was expertly cleaned up and had all his checks, and his daddy got to dress him for the first time. Scott and I enjoyed tea and toast, and then it was time for Scott to go home. I was wheeled to the maternity ward for the night, eager to head home with baby Lucas the next morning.
However, that wasn’t to be.
During the night as I slept, Lucas’s temperature kept dropping. They brought my baby to me so that we could cuddle skin to skin to bring his temperature up. He was wrapped in warming blankets. By the time the morning doctor came to do his checks, Lucas was maintaining a normal temperature, and the doctor said he looked great. He did mention that Lucas had extra folds on his eyes, but that this could be normal and unless there were other signs there was nothing to worry about. But then he went on to say that he wanted to monitor Lucas for another 24 hours due to his temperature issues overnight, so it was agreed that Lucas and I would stay in hospital an extra night.
Lucas did manage to regulate his temperature over this second night. But he cried the whole night long! In the end I was so exhausted that the midwife came and took Lucas for a couple of hours so that I could get some sleep. She brought him back to me when he was ready to feed, and I was so happy to see my baby boy. That afternoon, we were finally released to go home. Discharge papers were done, and Lucas and I were escorted from the hospital into Scott’s waiting car.
It felt so good to be home!
Lucas and I settled in happily. Scott mentioned that he had received a message from someone he knows saying,
I’m sorry to see that your boy has Down syndrome.
Honestly, we thought nothing of it and thought the person was obviously mistaken. Granted, Lucas didn’t look his best yet, he was still all squidgy and swollen.
But, later, I took it upon myself to search trusty old ‘Google’ for the term “extra eye fold.” The very first link that popped up was Down syndrome. I quickly swiped that away and wouldn’t think a thing about it.
We had two beautiful days at home with Lucas. Robyn was besotted with her baby brother, and although Harry wasn’t so sure to start with, he soon came around. We headed out for our Covid-restricted one-hour of daily exercise and went for a walk around the block. It was Lucas’s first walk outside, and he cried the whole way round. By the time we arrived home, Lucas was completely quiet, and his nose and lips had turned blue.
Not sure what to do, I rang the midwife, who suggested ringing the GP, who then advised ringing 999, which is what I did. Within minutes, an ambulance was outside, the crew inside our home, where after one look at Lucas, they bundled both him and me into the ambulance and blue-lighted us to the hospital. I will never forget the paramedic grabbing my son from my arms and running into Resuscitation, handing him over to the specialised team all prepped and waiting to save him.
The team assumed that Lucas had an infection. He was immediately given antibiotics, put under a heat lamp, and cannulas were inserted into both hands and both feet. Bloods were taken, and a chest x-ray was done. The paediatrician came and told me that Lucas had a heart murmur and that his heart was enlarged.
I put two and two together and somehow uttered the words.
Does Lucas have Down syndrome?
I whispered. The doctor replied,
He does show prominent features. We can do a genetic test whilst we check for infection if you like?
I found myself, somehow, agreeing. Once we were settled in the ward, I rang Scott. Despite myself, my first words to him were,
They think Lucas has Down syndrome.
We cried together over the phone.
We ended up spending days in the hospital. Lucas was swollen from having five different antibiotics and fluids administered. For some reason — we still don’t know why — Lucas’s blood was very thick and sticky, which made it difficult to draw blood from him. I wasn’t allowed to nurse my baby but spent time every couple of hours pumping so that he could be fed through a tube.
Lucas had to have Continuous Positive Airway Pressure (CPAP)on constantly in order to get enough oxygen. Every time they tried to remove it, he would have pauses in breathing, and his oxygen levels would plummet. But, eventually, he got to a place where he no longer required extra oxygen, and I was able to nurse him. Once his infection markers came back clear, Lucas was able to come off the antibiotics. At that point, it was safe for him to undergo an MRI scan and a heart scan. The heart scan revealed a small atrial septal defect (ASD), which his doctors are certain will repair itself with no intervention. The MRI scan results came back with more troubling news: Lucas had had a stroke, which was the precipitating event for all of his difficulties over the last five days.
I remember that I was sitting in a chair, holding Lucas, when I was given this news. I remember asking why he’d had a stroke and the doctors saying that they didn’t know but would investigate further. I remember bursting into tears and looking up at the doctor, begging him, “Please, please, can we go home right now?” The words that I most longed to hear came next:
Yes, you can go home. Ring your husband to come, and I will get the discharge papers ready.
Our arrival home coincided with Easter weekend, and we knew that the genetic tests would take a few days to come back. Later in the week, the paediatrician phoned with the news.
Lucas has a type of Down syndrome called Trisomy 21. Would you like to come in tomorrow to meet with myself and our Down syndrome specialist for a chat?
I agreed to the meeting, hung up the phone, and completely broke down. Scott held me, cradled me, and also crying said the words that would get us through:
It’s fine, it doesn’t matter, he will be okay, we will be okay.
Amazingly, we heard those same words from all of our friends and family as we prepared for the next day’s hospital visit. We met with the two paediatricians who are still to this day a part of Lucas’s life and regularly check up on him. They took the time to explain everything in detail to us, all in a positive light. We were given leaflets and handouts on places to look for information and support groups we could turn to for help. We knew we weren’t alone.
Still, I spent the next days crying and gathering information and just being very, very sad.
But, as time goes on and I get to know Lucas better, I am learning to come to terms with his diagnosis. Yes, I still have moments when I cry, when all the emotions overwhelm me all at once. And yes, I still find it hard to talk to people about it face to face, as I find myself welling up and my voice goes a little wobbly. I know in time that will happen less and less.
Lucas has to have extensive physiotherapy due to his low muscle tone and the effect that the stroke has had on his right side. He needs some specialised equipment to help him with feeding, bathing and playing, and we have to schedule regular check-ups which will be the case throughout most of his life.
But Lucas is growing! He loves food and is very cheeky and smiley. He will meet his milestones in his own time. Yes, it will be slower and will take extra work to get there. But it is not a matter of “if” but “when”. Lucas has a very close bond with his sister and his brother. They don’t think any differently of him. They just love him, as everybody who meets him does.
And I couldn’t imagine anything better than that. Just to be loved.
You can follow the Lucas and his journey here.
Written by mum, Kerry-Ann Bellamy
Why not check out ‘Making Chromosomes Count‘ Down syndrome awareness magazine right HERE.
Magazine cost £3.50 each plus postage.
A yearly subscription (3 issues) will be £10 per year, plus postage.
For bulk orders or to see whether you qualify for complimentary copies, please go to MCCGrabYours@gmail.com
For overseas please email MCCGrabYours@gmail.com for postage quotation.
To donate: Donate – Making Chromosomes Count
To submit your stories or news please head to ‘Submit article’ through the MCC website.
Facebook: @MakingChromosomesCount Twitter: @ChromosomesNews Instagram: @mcc.news LinkedIn: company/makingchromosomescount