Prenatal Diagnosis & Preparing for the birth and/or NICU experience
By Melissa Dawn Roy (Project Leader for Nimkee Blessings)
‘Welcoming’ a new baby. Is there anything more exciting? Will it be a boy or a girl? What shall we name him/her?
These are but a few of the anticipatory thoughts that often go swirling about in your head as those tiny, microscopic cells are rapidly multiplying in your womb.
It’s an incredible discovery for most. We automatically skip ahead 9 months and fantasize about that precise moment when our little one is delivered safely, into our waiting arms. Oh joy, oh bliss!
Everything is supposed to be perfect---but sometimes something goes wrong.
I will never forget how excited that I was while awaiting that first ultrasound appointment. I was going to get a chance to see my baby for the first time! I couldn’t wait to see the face, arms and legs, fingers and toes. What a miracle about to be unveiled!
With the dawning of new technological advances in medicine, comes a whole other wealth of knowledge at our fingertips. We hope for the best test results, but some of us have to prepare for other pregnancy and delivery options instead, or for baby’s treatment plans following birth.
Some of the new prenatal tests can be performed relatively early in the first trimester, and are relatively non-invasive. These procedures would include testing the mother’s blood for specific fetal cells which may reveal a possible complication or defect in the fetus.
Another form of non-invasive testing is in the form of ultrasound to visually conduct measurements and dates, as well as the development of the fetus.
Invasive testing includes Chorionic Villus Testing, and Amniocentesis, both of which require the insertion of needles/catheters to collect a sample of fetal tissue cells. These cells then undergo various tests to determine the health of the developing fetus.
I remember the day that I received the test results of the maternal serum blood testing which I opted for. I figured it would be “one last thing to worry about”. The results revealed that there was a 1:8 chance of my unborn child having Trisomy 18. My midwife explained to me what that was, and scheduled an appointment for me to see a genetic counsellor a couple of days later.
The genetic counsellor explained to me what these test results ‘may’ mean, and presented me with some options. I decided to have an amniocentesis performed for a more accurate diagnosis before planning my next decisions.
A few weeks later I received the results of the karyotype testing which was performed on the collected fetal cells during the amniocentesis. I found out that I was carrying a boy, and he had an extra chromosome number 13 in every cell tested in the sample. He was going to be born with Full Trisomy 13, also known as Patau Syndrome.
I was devastated, to say the least. After succumbing to a complete meltdown, I gathered my wits about me and prepared for the journey that lay ahead for my unborn son and I.
How does one prepare for the possibility of fetal demise in the womb, or shortly following birth? What if your baby requires some extra care in the Neonatal Intensive Care Unit (NICU), or requires surgery? It isn’t easy, but we’re here to assist you in this, should you or someone you know require some support of this kind.
Please consider the following suggestions:
- Request to speak with a geneticist, or genetic counsellor regarding any type of chromosomal or g genetic condition which may have been detected.
- Request to see a neonatologist or surgeon, or other specialist per your child’s needs, should you find out that your baby may require specific treatment or surgery following birth.
- Be sure to write down any questions you may have prior to your first visit to your prenatal specialist, which may also be known as a perinatologist, and/or neonatologist (fetal specialist) should one be required during or following birth.
- Request information and research your baby’s condition so that you may make your own educated decisions when the time comes to do so. You will become your child’s greatest advocate and supporter. Education does help to erase the fears of the unknown future.
- Reach out to a support group, or therapist in your area.
- Consider joining an online support group if you feel comfortable doing so. I did, and I can say without a doubt that it has helped me immensely along this very scary and emotional rollercoaster ride of grief and healing. It is a personal choice, and may not be for everyone, and remember that they are there to provide some comfort or support along the way, but are not medical professionals. If you feel that you require some extra assistance, please reach out to your physician so that you may be guided in the proper direction. Your emotional needs are very important during this very delicate time for you and your unborn child.
- Request a tour of the Neonatal Intensive Care Unit that your child may be seen at. Speak with the Social Workers in the department to help alleviate any fears or concerns which may arise.
- Reach out to your family, friends, and social systems and inform them of your situation. You may be very surprised by the outpouring of love and support that you and your family will receive along the way.
- Be gentle with yourself, and your partner.
- Seek out resources to help prepare other siblings for the impending birth.
Most of all, remember to try and take time to enjoy your pregnancy. I know it’s easier said than done, but it can be done. Having found out the sex of my unborn son, I was able to name him. I became very protective of this little guy, and found myself really cherishing the moments we spent together while he was still tucked safely away inside my womb. I would rub him, rock him, and tell him stories about our daily adventures.
One of the most therapeutic things I did to help get us through, was to start writing a blog---(online journal)---open for everyone to read. It was a great way to get my emotions out of me and share our journey with others, without having to look anyone in the eyes and speak the words out loud.
This pregnancy can still be a beautiful time if you learn to embrace it, and celebrate each day together.
Please know that you are not alone in this journey, and that many others like us have been where you are. Project Sweet Peas is here to assist you and your family regardless of your situation or outcome. Please feel free to check out our Website and Resource Page for more information and support links.
(http://projectsweetpeas.com/Resources.aspx)
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