Rose's Down Syndrome Day: A Year of Awareness and Appreciation
Rose Cade
Welcome to Rose's Down Syndrome Day—a day to celebrate her journey of resilience, love, and hope. From the moment we learned about Rose's diagnosis of Down syndrome, our lives were forever changed. Join us as we reflect on Rose's incredible journey from just before diagnosis to birth.
We found out about Rose’s extra chromosome the day after we found out if she was going to be a boy or a girl. We had gone for a private, 16-week scan, to find out her gender. This is a little earlier than if we waited for the next hospital scan at 20-weeks - the anomaly scan. We had spoken about names, and the only name we could agree on was for a girl - called Rose. We had no name for a boy so saw this as a sign! Although, I picked a boy’s name, but it was a bit extravagant… Angelus Gabrial (a character from a game). So, needless to say we, were absolutely over the moon to find out our baby was going to be a little lady. Happy tears were shed, and we all celebrated.
Two weeks before our gender scan, Becky had a blood test to check for Down Syndrome. We didn’t think too much of it and assumed all would be okay.
In the UK you are offered screening tests, which you can opt-out if you wish. The initial test is undertaken at the 12-week scan, this involves looking into the skin around the neck of the baby. If this is unclear or if anything is suspected, you can then be offered a blood test. This can look for Down Syndrome alone, or for 3 different abnormalities, which includes Down Syndrome, Edwards and Patau’s. We had decided to have the blood test, even though it would not change our decision to keep our baby, we wanted to be as prepared as possible for her arrival.
Less than 24 hours after having our gender scan, we received a phone call from the screening team telling us the news that Rose had a high chance of being born with Down syndrome. The chances were 1 in 135. The NHS cut off point is 1 in 150. We still thought the chance seemed quite low, potentially being less than 1%. We then got offered the non-invasive blood test called ‘NIPT’ (non-invasive prenatal testing). Just before having the blood test, you have a consultation with the midwife and doctors who will go over all the different outcomes of the test, and again, how it’s still not 100% accurate, although it is very close. This is not enough to diagnose T21 during pregnancy. You would need to have an Amniocentesis to have a full diagnosis prior to birth. We choose not to have this done as it comes with risks of miscarriage. During our consultations, we were given the option of termination but we both knew we did not want this and made us feel uncomfortable as we got asked on many occasions after this. The results took two weeks to come back for the NIPT. This showed a very high chance of Rose being born with Down Syndrome, with a 99.7% chance. The emotions were vast. Fear, uncertainty, and a sense of loss for the future had overwhelmed our thoughts. Once we had time to take in the news and were over the initial shock, we took time to research Down Syndrome and educate ourselves on all that may follow.
During our appointments, we found we had to tell nurses and doctors every time that Rose had “suspected T21 (Trisomy 21, this is the formal name for Down Syndrome)”. One doctor mentioned that we must be asked so often that they put a sticker on her notes so that other doctors and nurses could see from the front and wouldn’t need to ask.
This was a very anxious time for us all and we kept it quite private to ourselves until we had done our research. We had amazing support from the lovely staff at the hospital but wanted to do our own research into Down Syndrome. We consumed a lot of content here but started to come across parts of research where we looked at the complications associated with Down Syndrome. We read about complications that can involve the heart. This suddenly became our biggest fear.
We were sent over to St Anne’s hospital for our 20-week scan. This was for the heart specialist to check Rose’s heart. These appointments were long and difficult to get a clear scan of Rose, this was quite taxing for Becky. We had to keep coming back fortnightly to assess Roses’ condition - we had read up and the two main difficulties are Atrial Septal Defect (ASD) or Ventricular Septal Defect (VSD). Now, Rose being greedy - she decided to have both and was diagnosed with an Atrioventricular Septal Defect (AVSD). At this point, we had to have consultations and we were told what no parent wants to hear…Rose will need surgery. The specialists planned for it to be around the age of 6 months old.
We had a lot of check-ups, where we had to check her heart rate and movements as she was expected to be small. Also, having suspected T21, they are prone to getting into a funny position and getting into complications with the umbilical cord.
It was decided early on that it would be better for Rose to be born via C-section. This would be less stressful for her body.
Once we had been given all the information of what our little girl may be born with and it had sunk in, we just looked forward to having her in our arms. Due to her difficulties, she was always planned for appointments at the hospital for check-ups and to make sure she was okay. This really put our minds at rest and helped us to just focus on the exciting time and look forward to meeting our baby Rose.
Rose's journey is far from over - it's just beginning. As we continue to navigate the ups and downs of life with Down syndrome, we are filled with gratitude for the love and support that surrounds us. We invite you to join us on this journey, to celebrate Rose's triumphs, and to spread awareness and appreciation of Down syndrome one step at a time.
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