Our almost five-year-old daughter came into our lives and turned our world completely upside down when she was just a month old . She is strong, beautiful, and independent. She also has Down syndrome. We were aware of her diagnosis before she was placed with us. It was never something we expected or planned, but we are truly in love with our girl and are so glad we brought her home. Many families seek out a child with Down syndrome for various reasons. Thankfully, there are numerous organizations and resources that help connect prospective adoptive families to birth parents of children with Down syndrome.
To Those Pregnant With a Child With Down Syndrome
If you are pregnant with a baby who has Down syndrome, please understand you did nothing to cause your child’s diagnosis. Although Down syndrome is considered the most common chromosomal condition diagnosed within the United States, happening in one out of every 700 babies, it is still random and unpreventable. It can affect any baby during any pregnancy, no matter the mother’s age or physical health.
So, What Is Down Syndrome?
In the late nineteenth century, John Down published the first accurate description of a person with Down syndrome. As medical advancements have been made, we have learned so much more about what Down syndrome is and what individuals with Down syndrome are capable of. Down syndrome can be diagnosed during prenatal screenings or at birth. Prenatal screenings can be done with blood work, ultrasounds, and even amniocentesis. Because there are certain “markers” (or characteristics) of Down syndrome to check for, your doctor might recommend specific tests to help get a more accurate diagnosis.
Because of the physical traits associated with Down syndrome, many infants are not diagnosed until birth. A chromosomal analysis called karyotype is needed in order to give an official Down syndrome diagnosis.
The 3 Types of Down Syndrome
There are three types of Down syndrome: trisomy 21, translocation, and mosaicism. Trisomy 21, which is the most common of the three, counts for 95% of all Down syndrome cases.A child with Down syndrome has an extra copy of the twenty-first chromosome. Having an extra chromosome affects every aspect of a child. Physical features vary from child to child; however, many common features are seen, such as large, almond-shaped eyes, a narrow nose bridge, a narrow jaw line, small ears, low muscle tone, and a shorter stature.
Translocation accounts for roughly 4% of all cases. Translocation occurs when part of the twenty-first chromosome breaks off during cell division and attaches to another chromosome (usually chromosome 14). The similarities between translocation and trisomy 21 are pretty similar.
Mosaicism occurs when there is a mixture of two types of cells, some containing the typical 46 chromosomes and others containing 47. Mosaicism accounts for only 1% of all cases, and these individuals are often slightly higher functioning than other individuals with Down syndrome.
Typically, children with any form of Down syndrome have a collection of health concerns. About 50% are born with a congenital heart defect that may or may not require surgery at birth. Many also have issues with hearing loss, hypotonia, vision problems, and cognitive delays. On average, babies with Down syndrome begin some form of therapy by the age of 4 months. This early intervention is vital to ensuring the child has all the necessary tools to reach typical milestones. Physical therapy, occupational therapy, in-home supportive services, and speech therapy will all be needed during the child’s life.
It is not uncommon for babies with Down syndrome to have multiple medical specialists, especially during the first year. Cardiologists, pulmonologists, gastroenterologists, ENTs, audiologists, and ophthalmologists are just some of the medical professionals the child will need to be seen by.
Many children with Down syndrome live long and productive lives. They can go to school, hold jobs, create meaningful relationships, and possibly live on their own or with limited supervised care. There is no way of knowing what a child will be capable of at birth. Just like children without Down syndrome, children with Down syndrome will need love, support, and encouragement in order to reach their goals.
Placing Your Child for Adoption
Honestly, I was overwhelmed and exhausted during the first year of my daughter’s life. Between medical appointments, therapy sessions, and just making sure she didn’t get sick, I was often running on fumes to get things done. Therefore, I hope you do not feel guilty about considering placing your child for adoption. If you do not feel prepared, supported, or able to give your child the care they need, adoption is a wonderful and selfless act of love. This is especially true since so many children with Down syndrome are aborted. In the US, around 75% of babies with a confirmed prenatal diagnosis of Down syndrome are terminated. Of those 25% of live births, around 10-12% are placed for adoption.
Perhaps the most important thing you can do is speak with a professional to go over your options and rights as a birth parent. They will help you figure out what path would be best for you and help you understand the type of adoption you are considering.
You have the option to decide if you would like to do a closed adoption, open adoption, or semi-open adoption. Closed adoption means you will not have any contact with the child or the child’s adoptive family. Once the child reaches legal age, you will be able to choose whether you will allow the child to contact you.
Open adoption means you will have a relationship with the adoptive family. This could mean having yearly visits, participating in major events, and generally being involved in the child’s life. The relationship would depend on whatever mutual agreement you and the adoptive parents agree to. There are a few guides on Adoption.com that can help with an open adoption. Because there is a lot that goes into an open adoption, there is a lot to consider.
Semi-open adoption is a mix between closed and open adoption. You might receive updates, phone calls, or photos of the child throughout their lives. However, you are not part of the family’s day-to-day lives. The agency will help you figure out what adoption plan feels best for you and make sure you understand what legal rights you have in each situation. Once you have spoken to the agency, they can help you get connected with prospective families who are ready to take in a child.
How the Adoption Process Works
Really, there are not many differences when it comes to placing a typical child for adoption and placing a child who has Down syndrome for adoption. There are many options for Down syndrome adoption. The National Down Syndrome Adoption Network helps to connect families and agencies across the United States. They can also connect you, as the birth parent, to resources that can get you in touch with a professional and help you set up an adoption plan. This is also a great place to connect with families who are specifically looking into Down syndrome adoption.
But don’t feel like you need to go to a specific agency to get help. Almost all adoption agencies work with children who have Down syndrome. If the child needs specific medical care, they might require prospective families to take additional courses to prepare themselves. That will be decided on a case-by-case basis.
Once you have chosen an adoptive family, you will meet with a social worker to go over all the legal paperwork and processes. Placing any child for adoption is a huge decision and most agencies want to make sure you are fully ready and able to take the final steps. It is not something to take lightly. There are family profiles you can look at right away, as well as profile books the agency can share with you. Many families are specifically looking for children with special needs. Often these children are not easily adopted due to fear, but there are many, many families who would love a child with any abilities.
When the child is born, it will be up to you if you want to see him or her. Many birth parents like to spend some personal time with the child to say their goodbyes before the child is handed over. You can work with your social worker and nurse at the hospital to make sure you are given that opportunity. If you feel like you can’t see the child, that is ok too. Trust your gut, and don’t push yourself to meet expectations that others might put on you.
A child with Down syndrome might need immediate medical attention after birth. This is to ensure their lungs, heart, and organs are functioning properly. Many times, they are required to use a feeding tube and receive oxygen for the first week of life. This is due to the low muscle tone and underdevelopment that are sometimes present in a child with Down syndrome. If the child is required to stay in the hospital for multiple days, you will sign the legal forms when you are discharged. Many adoptive families like to be there for the first few days and instantly become part of the child’s medical team. Once again, speaking to a professional or social worker prior to this event will help you understand your place during this transition time.
Our daughter was a safe surrender baby. That means her birth parents did not have a plan in place prior to her birth. We were told they were previously unaware of her Down syndrome diagnosis and signed over all rights immediately after her birth. Because she was then considered a ward of the state, she was admitted to the hospital for two weeks before being sent to an orphanage. We found out about her right before she turned a month old. We have no way of contacting her birth parents at all, even once our daughter reaches legal age.
This route isn’t recommended because children with Down syndrome need to feel secure and loved right away. Because they struggle with basic understanding of emotions, a lack of physical touch can be detrimental to their development. I often wonder if our daughter’s birth parents made their choice out of fear and feeling overwhelmed, or if they made an educated decision. Our daughter spent her first month without bonding with a specific person. Because of this, we were concerned she would be unable to bond with us. Luckily though, our daughter bonded with us almost immediately.
Taking the time to look into all your options is truly commendable! If you check Instagram or scan a few blogs, you will find hundreds of parents who have adopted a child with Down syndrome and felt an increase of joy ever since. These children are full of love and wonder; because of that, their adoptive families are forever grateful to the birth parents who made the ultimate sacrifice to place their child’s needs before their own.
I will never get a chance to meet our daughter’s birth mother. I will never get to thank her for trusting me to raise her beautiful girl. I will never be able to wrap my arms around her and explain the love I will always hold in my heart for her. So, I want to thank you now. Thank you for putting your child’s needs first. Thank you for considering all your options and giving your unborn child a chance at life. If you choose to place your child for adoption, thank you for sacrificing so much for someone else. As an adoptive mother I can tell you, you will forever live in the hearts of another family. They will remember you and the love you showed them by letting them love your child. Because I can’t thank our daughter’s biological mother, I want to end by simply saying to you: Thank you!