Appendix 11 – A letter from a Barnet parent to share (2019)
A note from the other side
“The decision to have a third baby was one made out of pure love. We have two other children whose cuteness and joy was just addicting. We wanted more. I conceived easily and the excitement was overwhelming. I made plans and daydreamed about my future on a daily basis.
I had a straightforward pregnancy. At the 12 week scan, I was given a 1 in 1728 chance of Down Syndrome—negligible. Everything was going to plan. However, because I kept insisting his movements didn’t feel normal to me and because the baby was measuring small, I was induced at 38 weeks.
The birth was easy: one and a half pushes and he was out. My heart burst with joy and my husband was in tears snapping a thousand photos of the moment our son was born. The midwife lifted him onto me, but I immediately noticed he wasn’t breathing and started vigorously stroking his back. They whisked him away and a medical team rushed in; I was calm. Then the paediatrician asked, “did anything come up on your scans? I see traits of trisomy 21.”
And there it was, like a bomb at a picnic—Down Syndrome.
He had almond shaped eyes, a low nasal bridge, a large protruding tongue, a single palmar crease, and there was a space between his big toe and his other toes. My husband insisted, almost pleaded, that he had just been born, he needs a few minutes to “air out.” She explained to us that only a genetic test would confirm, but that she was fairly certain he had Down Syndrome. He was taken to the neonatal unit for oxygen and tests and my husband and I were left in the labour room—babyless— watching our lives fall apart. I couldn’t come up for air. Life had failed me.
Later that day, I stood over the incubator staring at this baby covered in wires. The nurse said, “congratulations, he’s gorgeous.” Her comment was so far from my reality. I couldn’t see cause for celebration - only the promise of a lifelong burden. He didn’t look cute to me, he looked like a diagnosis. I had more dark thoughts than I’d care to admit. Where was MY baby? I didn’t want this baby. I was petrified about the future, I couldn’t think ahead to the next half hour without feeling sick. Our lives were over, our futures shattered by his inevitable dependency.
I can’t pin-point exactly when things started to change. For us, there wasn’t a single moment. There were a series of turned corners—mini battles won. Surprisingly, what had felt would be a perpetual armageddon, was more of a short dark tunnel. At the end of that tunnel is a life that looks so much like the one we wanted when we decided to have another baby; It’s sunny, warm and sweet. Perhaps most surprisingly, our new life has gifted us with so much meaning.
Our son is helping us do the work we’ve always wanted to do. Since I was a child, I’ve yearned to be better and have always felt disappointed in myself when my actions didn’t match the goodness I wanted to unlock inside of me. But, as with all things, the work it takes to become a better human is often so uncomfortable. Becoming the best, most beautiful version of ourselves, both inside and out, hurts! My baby boy has forced me to grow, slowly inching me towards the person I’ve always wanted to be. He’s already started washing our eyes of prejudice—prejudice we didn’t even know I had. Where I once could only see Downs in him, I now sometimes catch myself looking at him and I can’t see it at all. It’s so bizarre. I know it’s there, but my eyes don’t see it. I find myself more often looking at people for what they really are, seeing beauty where I would subconsciously see difference. Our world has become so much more inclusive, positive and beautiful in the most genuine way. We are learning to judge someone’s worth by their essence, not their academic or financial success. Although I’d like to think my husband and I already had that benevolence in our hearts, our reaction to his diagnosis showed us that we didn’t. He is helping me achieve something I desperately wanted, but was too weak and afraid to do it on my own. For that alone, I am so grateful.
Our son has also brought immense emotional depth to our family. Our children adore him in a way we didn’t know was possible. It’s like the purest part of their souls recognise each other. When I chose to become pregnant, I knew I wanted to give them a sibling, but I had no idea I would be giving them so much more. Their relationship has an exceptional amount of tenderness. It’s more than I’ve ever dreamed could exist between siblings. We are watching our children develop empathy, acceptance and love in ways we were not equipped to teach them. In turn, they bring out the joy and adventure in their baby brother and intuitively push him to his limits, edging his development forward. We have a different dimension of love in our family and it’s wonderful.
He has unified us, not just our nuclear family, but our extended family as well. He’s solidified our friendships and brought out the very best in everyone we know. It’s been a journey for everyone, and like us, everyone around us is finding their best selves. It’s as if he’s a flame, lighting up people’s souls. I feel a sense of honour to be the mother of a “soul-lighter.”
After all, isn’t that what most parents want for their child, for them to make a meaningful difference in the world? Somehow, along the way, I’ve lost sight of what is REALLY meaningful. I don’t know when I started valuing titles like doctor, lawyer and CEO more than soul-lighter. The fears we have about the future and what his achievements will be often reflects the need to work on a flaw in our values, not a fault in him. We are still novices on this journey, but we are learning.
In the first few weeks after he was born, I wouldn’t have wanted to trade the utopian plans I had made while I was pregnant for the promise of a more enriched life—not at the cost of the difficulties I envisioned would accompany a DS diagnosis. We do still face some difficulties, including complex health issues. Sometimes looking too far into the future can still seem daunting and I have days where I don’t want to be different, where the unknown tickles my anxiety. But, my husband and I are facing these challenges.
Once we found a doctor we trusted, and we started learning about DS and overcoming our own archaic views, the hills we have to climb became less steep. Once the love for our son hit us, the fear for our future became less sharp. But, our journey is not always linear. Living a life where we value inner beauty versus outward achievements, where we thrive on diversity instead of uniformity, is harder than it looks!
However, overcoming ourselves to cope with the medical issues, to address our flaws, and to rise up and face life head on—with love—has added a new dimension to our lives that we wouldn’t want to live without. With each summit we conquer the view becomes more breathtaking. We are finding that we like ourselves more now that we did before our son was born. Our family is stronger, deeper and braver. Our love is more fierce and our hearts are more generous. Our challenges have forced us to grow into people we are prouder to be. In a way, we are now grateful for the challenges we feared so much when he was born.
Though this unexpected turn in our path initially felt like we had fallen off a cliff, sometimes it takes falling off a cliff to realise you have been growing wings.”
Feedback from a parent about communicating the diagnosis postnatally
The moment of diagnosis is a huge responsibility. It often sets the tone for how that family bonds with the baby and sees the baby. Families remember these words for years and years to come. It’s the first moment of “therapy,” as it can lead to positive or negative emotions and labels that can really affect not only the family, but also the child. I think there needs to be a really clear pathway for how that happens postnatally.
The news has to be delivered by a doctor/midwife/professional who is trained in actual current positive information about people with T21 and should exclude words and gestures of pity. There should first be a congratulations for the birth and the baby should be referred by their given name if there is one. If possible, the person delivering the news should be a person the parents have met and trust, such as the antenatal team or family GP. The news should be delivered within 24 hours of any suspicion.
Postnatally, these conditions should be met:
The parents should have seen and held the baby.
The parents should be together or the mother should have a relative/friend with her to support her if the father isn’t present. If possible, the baby should be with the parents.
It should be done in private once the mother has recovered from birth/anaesthesia.
Initial health information should be limited to the baby’s first year of life, unless the parents ask specific questions. Only discuss potential difficulties that are pertinent to that baby and keep the discussions about health issues to what may arise during the first year, such as a need for an echocardiogram and thyroid tests, vision and hearing tests.
Not only should parents be signposted to helpful resources like PADS (Positive About Down Syndrome) and the Down Syndrome Association, but also to other parents who found out postnatally and are willing to be contacted.
The person delivering the news should be able to explain why it wasn’t picked up in prenatal screening and why that person was not referred for prenatal testing. For example, if the screening showed a 1/2000 chance of Down Syndrome, it would not have made sense to refer for an amniocentesis where there is a 1/100 risk of miscarriage. There is a lot of self-blaming that goes on, so it’s a really important part of the conversation to eliminate a lot of this blame that parents put on themselves. It should also be mentioned that mothers of all ages have children with Down Syndrome.
Parents should then have another appointment made for them within a week where they can ask further questions. If necessary, further appointments should be made to clarify doubts. Maybe these appointments should be made with the antenatal team who will be best trained in answering questions or maybe the paediatrician, who may be able to answer questions about the future as well.
Parents should be referred to psychological support at the first diagnosis and assessed again at the second conversation.
Professionals should have accurate stories of encouragement. Reinforcing that children with Down Syndrome are thriving in mainstream education, living independently, working, having meaningful relationships, getting married and living full lives.