Life and Love with Down Syndrome

 Part 3: The celebration of life and love

We rejoiced every week that we had good ultrasounds and that my pregnancy progressed. We were prepared for anything. We had to live in the realistic present but we chose to celebrate the life and love that this foetus represented. Our prenatal care had been transferred to higher level tertiary hospital in case our baby required Level 3 Neonatal ICU (NICU) care and we had already met most of the team that was put together to support us for the “in case” scenarios. We were told to anticipate a possible premature delivery. The placenta of a baby with Down syndrome has the same genetic make-up as the baby. Therefore the placenta has an extra Trisomy 21 chromosome. This makes the placenta’s natural deterioration over the course of the pregnancy less predictable. My OB/GYN didn’t want to take any unnecessary risks of stillbirth, and so I was being monitored closely for fetal distress, or failure to grow in the womb. If these symptoms were present it would be better for the baby to be delivered early so that we could get the appropriate interventions needed to help her thrive.

I was in my 36th week. I was in an ultrasound and the technician noticed that the umbilical blood flow had decreased from normal, two days prior, to almost no flow, intermittently. The baby was showing signs of stress. It was time. I was able to go home, pack my bags and was admitted into Foothills Hospital the following morning. I called my mom to fly in, and fortunately my mother-in-law was in town as well. Another ultrasound confirmed that the baby was showing signs of trying to protect her vital organs as a last resort in stressful situations. Even though I had hoped for a V-BAC (vaginal birth after C-section), I knew this would probably not be offered to me. I was prepared for immediate C-section.

Considering all the stress and fear I had experienced during this pregnancy, I was incredibly calm. We had supernatural peace and joy. We couldn’t wait to meet her. We were ready. Hannah Lynn Dube was born on the 31 October 2014 weighing 5 pounds. She was beautiful and perfect. We fell in love. Her birth was such a special time for our family, and we were all so moved by the experience. Hannah means “full of grace and God has favoured me”. Surely God has already shown us His amazing grace and love through Hannah’s life. Once again, we chose to celebrate life and love.

Hannah in hospital crib

Hannah remained in the NICU for two weeks for monitoring even though she did not need any additional intervention. Our time in the NICU was a great opportunity to ask as many questions as we could think of to the neonatologists (NICU specialists), lactation consultants, physiotherapists and dieticians available to us. It was important for us not to leave the hospital until we felt we had all the information, referrals and “next steps” sorted out. Staying in the NICU also meant we could get all the various screening tests performed without having to go home and then travel back and forth to the various clinics. Cardiology is always a priority referral with a diagnosis of Down syndrome. We were also accessed by Endocrinology, as Hannah’s thyroid levels were low. Audiology checked her hearing and a basic ophthalmology assessment was performed to check for congenital cataracts. With all systems checked we were ready to go home.

 I was able to breastfeed Hannah, which I was thrilled about. I had read a lot about the challenges of breastfeeding a baby with Down Syndrome and hypotonia. However, with perseverance, encouragement, and a few adaptations, it is possible. Eventually Hannah’s heart condition did start to make feeding more of a challenge. Weight gain and feeding was my primary focus in order to get her ready for heart surgery. The large size of the hole in her heart meant she was using more energy with every breath. We were trying to balance energy expiration with calorie intake. We had to make it easy for her to feed, without losing the opportunity to learn the vital oral skills needed for feeding. Our goal was to get her to 5kg before surgery. We went from breastfeeding to bottle-feeding, to a special adaptive bottle, to nasogastric tube (NG tube). Hannah was 4months old, and her congestive heart failure symptoms were evident. It was time for open heart surgery, and we drove up to the Stollery Hospital in Edmonton where the paediatric cardiac-thoracic surgeons are based. Door-to-door we were in Edmonton for 11 days. It was both the most scary and most incredible experience a parent could go through. Hannah was a different baby after surgery, her colouring was now rosy pink, she had energy, she started gaining weight, her heart was healed.
 After surgery, we had 6 weeks of sternal precautions, where Hannah had to avoid tummy time and there were adjustments to the way we held her. After we got the all clear, I immediately started water therapy, allowing her to move in the pool and improve her core strength. In no time Hannah had regained her skills and quickly achieved new milestones.
Hannah at 1 year old
 Hannah just turned one year old. She is an incredible, curious, social girl and brings us so much joy. We have such a fierce protective love for her. We hope to give her every opportunity to develop and reach her potential. Her diagnosis doesn’t really affect us on a day to day basis. There may be extra appointments, and various therapies that we take part in but generally it
 hasn’t changed much. We are so thankful for the breakthroughs that we’ve had during our pregnancy journey and we are thankful for the miracles and healing we’ve experienced in this first year of her life. He has sustained us!
These are Karen’s recommended websites and links:

Your local Down Syndrome association

http://www.cdss.ca (Canada)

http://www.downsyndrome.org.za (South Africa)

For more personal stories and good information:

The Down syndrome diagnosis network

http://www.dsdiagnosisnetwork.org/#!unexpected-book/c1yjs

Brochure on Breastfeeding a baby with Down syndrome

http://www.cdss.ca/images/pdf/brochures/english/CDSS_breastfeeding_brochure.pdf

Karen and Brandon put together a video clip of the first year of Hannah’s life and she agreed to let me share it with you here:

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